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Empowering people with disabilities to live an incredible ordinary life.
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Thursday Jan 31, 2019
Thursday Jan 31, 2019
Here is the secret.... it is to start with developing valued roles. What is a valued role? A valued roles is the answer you give to the question 'What do you do?' when you meet someone new. [more on valued roles below] Guest Genia Sthphen also shares her story as a sibling, a mother to two sons, and how she has helped to create the good life for her son Will.
Professionally, Genia is a midwife to many, and an activist with a mission to band together with families to joyfully pursue the good things in life. She recently launched the Good Things in Life, which is an online community for young families who share a vision of the good life for their kids with disabilities.
You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.
Growing Up With a Sibling that has a Developmental Disability (DD)
Genia is the 3rd of 4 daughters, and her younger sister Kate has a DD. Genia’s two older sisters are a fair amount older, and it was really just the two of them (Kate & Genia) when they were growing up.
Genia remembers going to appointments with Kate where they had Kate do silly things, like hold onto the pencil, and they would pull on it until she let it go. Kate didn’t care much for holding onto the pencil and as a result, was diagnosed with having poor muscle tone. But, Genia and Kate thought it was funny because Kate would drag Genia around the house on her back by her toes.
Genia recalls, “At 5 mom sat me down on her lap and told me that Kate had a disability. Mom was serious, it was an occasion, She explained Kate would learn more slowly than other kids. I responded by crying. I was trying to figure out what was expected in this situation, and it was clear to her that the appropriate response was to be sad.”
It was a big deal for Genia’s mom. She had never experienced someone with a disability, Her mom was terrified, intimidated, and overwhelmed. It was something worth crying about for her.
Genia’s mom reached out and started to connect with other parents and other people that knew more than she did. She surrounded herself with this community and exploded into a powerful advocate. She stopped delivering the information in a way that elicited sadness and started having really high expectations. She had connected with some people that had worked with Dr. Wolf Wolfensberger, who developed the social theory of Social Role Valorization (SRV).
Genia attended her first SRV workshop at 15. It taught her language, and how the world works for people that are devalued.
Key Insight: Connecting with other families is important. Not just getting connected, but who you get connected with. What are their beliefs and mindsets? How you deal with grief and fear is guided by your mindsets and fear for a person with a disability.
When Genia’s second son Will was born he was very very sick. Genia recalls, "we weren’t sure he was going to make it. They were telling the family that he would have significant disabilities." Genia’s response was “Well yeah yeah yeah, but is he going to make it, let's focus on what matters here. And he did [make it!].”
What is Social Role Valorization (SRV)?
GS: “SRV is the universal ways that people are devalued in society. Devalued people are not able to access the good things in life the way that valued people are. For example, devalued people do not have the same opportunities for personal growth, education, meaningful work, freely given relationships, pursuing their interests. People access the good things in life through the roles we play in society. It is also how we connect and understand each other. One of the first questions we ask someone is “what do you do?”. It helps us understand and relate to each other through roles.”
There is No Risk-Free Path
GS: “If your major fear is that someone is going to be hurt or rejected, and the way that you prevent that is by keeping people protected and isolated from the people that might hurt them, then that leads you down a vision that likely includes a lot of services and people paid to keep the person safe.
Alternatively, if your mindsets and beliefs are that safety for vulnerable people comes through relationships, this leads you down a path of life in the community.
There is no risk-free path.”
What Does The Good Life Look Like for Will?
Listen to the podcast to hear how Genia’s family has thought about the role of student for Will. Genia and her family thought through the things that were likely to increase people’s high expectation and positive image of Will in the role of student, starting from the age of 2!
GS: “Will is now 12, and we think about for his peer group what are the typical valued social roles that a person holds? And, what are the kinds of opportunities that those roles bring? Then we pursue those things.”
Want proof!?! Watch the video below.
Video: Will Enjoying The Good Things In Life
Key Insight: Look to what is typical for people that don’t have a disability at that stage of life and focus on the roles the individual could hold to create your vision. Additionally, the person supporting needs to understand the social role and also have the social currency to help them get there.
In this podcast, Genia and I also cover topics including raising the consciousness of devaluation in our society, the experience of being a mother with a child that has a disability, and what the experience of having a sibling with a disability.
Tweet-able Moments from the conversation with Genia Stephen:
"Devalued people are not able to access the good things in life the way that valued people are. For example, devalued people do not have the same opportunities for personal growth, education, meaningful work, freely given relationships, pursuing their interests."
"...if your mindsets and beliefs are that safety for vulnerable people comes through relationships, this leads you down a path of life in the community."
"Look to what is typical for people that don’t have a disability at that stage of life and focus on the roles the individual could hold to create your vision."
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!
Love & Respect,
Eric Goll
Resources:
Will Social Media: Theadventuresofwill.ca
The Good Things in Life --> For Parents of young children with IDDs. Goodthingsinlife.org.
Contact Genia by email: Genia@goodthingsinlife.org
Creating Valued Roles with Janet Klees: Click Here
Too Busy to listen to the podcast now? Listen on the GO!
The Empowering Ability Podcast is available on iTunes and all other major podcast apps so that you can listen while on the go from your smartphone!
Wednesday Jan 09, 2019
Wednesday Jan 09, 2019
Yvonne defines grief, how to support others that are grieving, and shares her 7 takeaways to navigate through life, grief, and end of life.
In this episode of the Empowering Ability podcast, we have an in-depth conversation on grief with nurse and author, Yvonne Health. In this conversation, Yvonne defines grief, how to support others that are grieving, the difference between quality and quantity of life, and her 7 takeaways to navigate through life, grief, and end of life. Yvonne is an inspirational Speaker, author of the book ‘Love Your Life to Death’, and a TV and Radio host.
(Note: 25% of 'Love Your Life to Death' book sales purchased through this link go directly to Community Living Ontario)
You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.
Why Are We Talking About Grief?
YH: “I didn’t choose this, it chose me. Looking back at a 27-year nursing career we don’t talk about grief, we don’t talk about death and dying until it arrives. Then we try and navigate through it. This causes excessive suffering. Grief is a part of our journey, but by avoiding it we are creating excessive suffering.”
Seeing this suffering as a nurse Yvonne had to do something about it, so she took a leap of faith wrote a book about it, and here we are.
As as a nurse, Yvonne became attached to people and she suffered tremendously. She realized this and she became aware of how she was suffering and became curious about it. This led her to have more conversations with other carers.
YH: “I asked fellow caregivers, are we well prepared for grief death and dying? And they said, no. Then I’d have conversations with two people with the same diagnosis of terminal cancer and their families and see drastically different experiences. One family was acknowledging and allowing all feelings - laughing and crying and being open, and being truthful about what was happening. That person died more peacefully and the family navigated through their grief and was able to get through and find happiness again. Then there were other families who were angry and bitter, and demanding more treatments and there weren’t conversations being had. There was no eye contact, I could feel the suffering. I could see this over and over, and I had this inner voice telling me we had to see something different.”
What is Grief?
YH: "Grief is whatever makes your heartache. Often it is death, but it can be divorce, a diagnosis, complications at birth, job loss, not making the team. Grief is a part of our life. Anger is often a very big part of grief, and it can come out."
How Do We Support Someone Experiencing Grief?
YH: “I [we often] don’t know what to do, I [we often] don’t know what to say. We are more comfortable avoiding people when they are grieving. But the most important thing is that we need people to just show up. A hug, a text, an email, sit in silence. Just sit with someone and acknowledge and allow their feelings and not try and fix it. You can’t fix grief, you just have to allow it. We have to get back to allowing our humanness. You are qualified to just show up.”
Quality of Life vs. Quantity of Life.
YH: “What is enough quality of life is enough for one person isn’t acceptable for another person. There is always a treatment that we can do, but the question is should we? Wouldn’t it be wonderful if we have the conversation before something happens? The time to have these conversations is not when you are facing life or death situations.”
EG: “We can create a thought experiment for ourselves and think - okay if I got cancer and I was given a prognosis of 2 years to live with intensive treatment that is going to reduce my quality of life for that time, or I could have 6 months to live with a high quality of life. Which would I choose? And, you can do this now from a rational place now, rather than a fear-based place when actually faced with the decision. This decision will likely also change over time as we age, or our life situation changes.”
YH: “These types of situations being made when things happen can fracture families, and create divides that are difficult to repair. Let’s normalize creating an end of life plan. Imagine the suffering that we can alleviate.”
EG: “Only 50% of people have a will. Get your will in order. This is especially important for a family where there is a person with a disability because any transfer of your estate to a person with a disability can drastically impact their social assistance benefits.”
Yvonne’s 7 takeaways to navigate through life, grief, and end of life
1. The Next Best Time is Now! The best time to talk about, plan and prepare for grief is when we are young and healthy.
2. It Takes a Village to support: the ill, the caregiver, the dying, the bereaved and each other.
3. When someone is grieving, Just Show Up!
4. To be empowered, resilient and compassionate, Show Up For Yourself First!
5. Structure Your Life in such a way that you are self-reliant.
6. Find your Post, and hold onto it.
7. What will Your Legacy be?
To get the summary description of Yvonne’s 7 takeaways go to http://the7takeaways.ca/ to learn more, or you can listen to us discuss these 7 takeaways on the podcast by clicking below.
Tweet-able Moments from the conversation with Yvonne:
“Love & gratitude are the answer, no matter the question.” - Yvonne's mother, Waves of healing
“Our legacy is what we create in every moment of every day. It is how we make people feel.” -Yvonne Heath
“It [life] isn’t joy or sorrow, it Is is a rollercoaster, and when we take care of each other we can get through it [life] with greater joy.” -Yvonne Heath
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!
Love & Respect,
Eric Goll
Resources:
Yvonne's Blog/ vlog
Book: Love Your Life to Death
(Note: 25% of 'Love Your Life to Death' book sales purchased through this link go directly to Community Living Ontario)
Listen on the GO!
The Empowering Ability Podcast is available on iTunes and all other major podcast apps so that you can listen while on the go from your smartphone!
Wednesday Oct 10, 2018
Wednesday Oct 10, 2018
Learn from world class experts on housing for people with developmental disability.
I’m excited to bring you this podcast/ blog episode on the best of creating a home for people with intellectual/ developmental disabilities (IDD). In this episode, I have compiled audio clips that provide insights from 9 interviews I’ve completed with guests on creating a home for people with disabilities, along with my insights as a family coach. My desire to share this with you also comes from the experience of supporting my sister (Sarah) to create a home of her own over the last year. On July 4th 2018, Sarah moved out of our parent’s home and became roommates with me. This is Sarah’s first time living in a home of her own. There has been many events along the way that have come with incredible growth for everyone in our family, and support network.
9 Insights to Creating a Home Episode (I.e. Best of Home Episode)
This episode is a collection of insights shared by 9 guests who I consider as experts in the area of creating a home. Each guest has either directly been involved in creating a home for people with disabilities and/ or has evaluated housing services for people with disabilities. I’ve constructed this episode in a way that shares what I believe will lead to the best outcomes for people with disabilities and their families. You may agree or disagree with the perspectives shared in this episode, however, I invite you to consider these perspectives to determine what is true for you.
You will notice that I am using the language creating a home vs housing. I do this because housing refers to the physical building, and the physical building is only one component of what must be considered when creating a home for a person with a disability. When creating a home we must also consider the person’s other needs; their supports, their relationships, and what they will be doing once they are living in the space, etc..
Creating Your Home Workbook (Free)
Additionally, I have updated the ‘Creating Your Home Workbook’, to include these insights and perspectives. The original workbook was downloaded over 100 times, and I’ve sent the updated version to those of you who have already downloaded the original workbook. This workbook is designed to guide your thinking to create the best home for an individual with a disability, and to encourage you to take the first steps to make this home a reality!
Claim your FREE 'Creating Your Home Workbook!
The 'Housing' Problem:
If you are reading this blog you intuitively know that there are many additional considerations for a person with an intellectual/ developmental disability (IDD) when creating a home. Supports that exist to help vary by jurisdiction globally. Where I live, in Ontario Canada there is what many would call a housing crisis. As of 2016, the Ontario Government Ministry of Community and Social Services was supporting approximately 18,000 people with a developmental disability in group homes and other supported living, and an additional 9,700 people were on a waiting list for residential supports. So, the reported demand for residential housing support is over 50% greater than the supply. The demand is likely higher than reported because it obviously doesn’t include people who have not registered for the list. Reference: (The Toronto Star, 2016)
In many areas around the world there are long waiting list for people with a developmental disability in search of government supported housing. As you continue to read, I am going to outline that government supported housing is actually not the optimal solution for an individual with an intellectual/ developmental disability (IDD) in the majority of cases. You are better off designing and creating an individualized home that meets the desires and needs of the individual, which provides them control over their life.
9 Insights on Creating a Home for a Person with a Disability
1) The individualized one person at a time option is the best option for people.
(Michael Kendrick (PhD) is a well-known international consultant in Human Services. Michael is involved in consulting, education and evaluative work with many governments, private agencies, advocacy groups, community organizations, universities and colleges across the globe.)
In episode #047 I ask guest Michael Kendrick, “Why is investment in group homes an outdated idea?”
In Summary Michael Answers:
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Group Homes are based on the assumption that people with disabilities should live together. We [everyone else] chose to live with people we are compatible with.
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Group homes are forced shared living, and this often creates a stressful living situation.
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Investment in group homes creates the idea that it is the only option for people.
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Individualized one person at a time is much better because it gives you much more choice.
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The group home option is no longer at the leading edge. It is a dying service model.
Many jurisdictions have a freeze on the growth of segregated living across the globe.
2) The people living in group homes want a home of their own.
(Lynne Seagle, CEO of Hope House Foundation, a not-for-profit organization started in 1964 by family members, whom had sons and daughters with developmental disabilities, in Virginia, USA.)
Paraphrasing from podcast episode #045 Lynne Seagle shares,
“…finding out people didn’t want to live in group homes started with a survey. The survey asked the question, ‘Does everyone like where they are living?’ Everyone said yes. It was odd to ask 120 some folks a personal question and get the same answer. We then re-worded the question to, ‘How do you want to live?’. And, the flood gates opened. People answered 1 of 3 ways, from most dominant to least; 1) I want a home of my own, 2) people wanted a job (most people were in day programs or workshops), and 3) friendship and romance.
Lynne continues, “We [Hope House] had defined excellence as meeting all the rules – [our] paperwork was clean, [we had] no employee grievances, well-kept homes, and low staff turnover. We were looked at as the model in Virginia, USA. BUT, when we gathered these themes [truths] we reviewed our program plans and not one program plan addressed these needs of people. This was a daunting realization for our organization.”
As I reflected on my conversations with Lynne Seagle and Michael Kendrick, I thought about what it would look and feel like to live in a group home. I would be forced to live with people that I don’t know, and many of my freedoms that I enjoy would be taken away. I wouldn't always be able to do what I want to do, when I want to do it. I’d lose control of who is entering my home. This sounds terrible, and it is. Now to help you think about this further, there are similarities between group home living and living in a nursing home, or retirement home. When you think about living in a nursing home or retirement home do you get excited about the experience?
An important point to make here is that it is the model and system of group living that is oppressing people, not the people working in these models. The people are typically some of the most kind and caring people in the world. It is the model and system we need to think differently about.
3) Creating a home is about building a life, the house is only part of the picture.
(Ron Pruessen, is a father to Caroline, who has a developmental disability, is a member of Opportunities Mississauga, and he is the Chair of the Ontario Developmental Services Housing Task Force. The Ontario Developmental Services Housing Task Force was given $3MM in annualized funding, which has funded 18 pilot projects from the 200 proposals submitted.)
In episode #016 I ask Ron Pruessen, “As father, someone that is involved with a family group, and the housing task force what have you learned along the journey about housing?”
Ron shares, “There has been a lot of learning and frustration. The Government [of Ontario] is not doing enough and has a limited menu of things that they are doing [in housing]. There are many great ideas at the grass roots level. The variety of ideas is enormous, people have been extremely creative in imaging their futures. Individuals have been doing the visioning, and they see the possibilities out there.”
[In my opinion, this highlights the importance of individual options.]
Ron shares, the most significant example of creativity he has seen is building partnerships. The community can provide the best solutions. Not just because you can mobilize financial resources, but also because you can develop a wealth of opportunities (educational, social, employment), and this is incredibly important. The house is an important part of the picture, but it isn't the whole solution. Community connections improve quality of life, but the government can't do this, we have to do this.
Ron shares important insights in episode #016, which I have summarized above. However, there is one point that we discussed in that I do not completely agree with, and I failed to address this point previously. Ron shares, “I think the assumption for many years is that this [housing for people with a disability] is a government responsibility. It is the equivalent saying people need health care, which is provincially funded in the province of Ontario…. It is the equivalent of what we do for senior citizens in providing pensions and support for housing opportunities. It is a government responsibility, there is no question about it, I would argue. And, I don’t think the government isn’t doing enough. But, it is also a community responsibility…. What the community can do will provide better solutions to the problems.”
I agree with Ron’s comments that many people do hold the assumption that ‘Housing’ for people with disabilities is a government responsibility. This is the mindset that many of us continue to hold and it is perpetuating the ‘crisis’ state many families find themselves in. I disagree that creating a home is fully a government responsibility. Here is the reason why... When we [families] hold the assumption that the government is responsible for housing for our loved one with an IDD we give away the power that we have. We can put ourselves in a helpless state, or victim state. When we have hold this mindset that the government is responsible we accept the menu of sub-optimal options that the government provides us, and this puts us at the mercy of long waitlists, in many jurisdictions. And, this is a waitlist for sub-optimal options! If we hold the mindset that the government is responsible for creating a home for our loved one we are at the mercy of the government, and we give up our control. The good news is that we can take our power back. If families are feeling like a victim of a ‘housing crisis’ [i.e. you are waiting for government solutions], I invite you to consider making a choice to become a creator and to take your power back. In other words, the idea here is an invitation to take an active role in creating a home, vs a passive role waiting for a sub-optimal government solution.
On the flip side of this point, I agree with Ron in that we need to keep advocating to the government that more funding is needed to support our families in implementing/ funding our one person at a time solutions to creating a home. I believe Universal Basic Income (UBI) is a possible solution to the poverty situation that many people with a disability face. A realization that I have come to is that, the government isn’t going to solve our problems, but they can be a part of the solution.
[If you want to learn more about UBI I recommend listing to Sam Harris’s interview with Andrew Yang on the Waking up Podcast.]
4) Give people their own front door, and separate housing and supports.
(Chris Woodhead is the Group Director of Housing and Business Development for Dimensions UK. Dimensions UK supports 5,000 with learning disabilities and autism spectrum disorder (ASD).)
In my interview with Chris, In episode #025, he shares, “Dimensions UK’s aspiration is for people to have their own front door. Not all of Dimensions UK’s accommodation is in line with this aspiration at this time. For example, some housing is larger scale accommodation with 10 people living in one large accommodation, but over time Dimensions UK looking to remodel for a smaller scale more personalized approach. Housing and support are generally separate. Dimensions holds a core value that where you live is important to quality of life (health and wellbeing), but people should be able to choose who supports them. You shouldn’t have to move if you are unhappy with your support. There is a delineation between the tenancy agreement and the support contract. We operate around choice and control. If we get their housing right, and we get their support right then we hope they will continue to choose us.”
Chris also shares the Activate Model they have been piloting, which considers 8 different domains in each person’s life; 1) Physical health and wellbeing, 2) Communication and social interaction, 3) The physical environment, 4) Skills, 5) Relationships, 6) Service Staff, 7) Service Management, 8) Wider organizations. [Again, the physical environment (the house) is just a component of the solution.] The early results of this model in practice resulted in a 60% reduction in challenging behaviour, and an increase in satisfaction for support staff. If you would like to learn more about the research visit the Dimensions UK website.
5) Housing is a Community Issue.
(Janet Klees has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Currently, Janet is the Executive Director Durham Region Family Resources and Supports. Janet is the author of three books which are directly rooted in her experience with families, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades).
In episode #022, Janet shares, "Housing is a community issue, not a disability issue. In our most recent housing project, we partnered with Brockville and District Association for Community Involvement on a housing project called, ‘Housing is a Community Issue’. We asked families who were interested in housing to join us in discovering housing solutions together and 35 families showed up. This is incredible because we told the families up front that we don’t have any money to give. It shows how understanding families are that they are going to be part of the solution. Even in this housing crisis, people are still finding housing. With our project, we are thinking about what are the ways that people are finding to build, buy, rent, and to figure out housing. Then asking, ‘why can't these ways fit families that are looking for housing.'
This is an affordability issue, not a disability issue. If people need renovations it is a cost issue. We need to ally ourselves with all the people that are struggling for housing. There are organizations like Habitat for Humanity, and Options for Homes that we can ally with. If the Ontario Ministry of Community and Social Services (MCSS) is involved in housing they build a service, not a home. Families only have to think about their own son or daughter and think about works best.”
An important observation from Janet, “The change comes when the family realizes that this is their issue to work on.”
7 recommendations from Durham Region Families for for all of us (Government, organizations, and families) to think about as we work toward creating a good life for people with disabilities.
1. Home, housing and support are 3 different things and must be thought of separately.
2. Most housing challenges are affordability, not disability.
3. People with disability contribute to their communities, they are not a burden.
4.Getting good housing and support doesn't mean taking away the individual’s control of their life.
5.Providing renovation dollars allows families to be creative with their current home today (stabilize current situation) and allows for flexible housing in the future.
6. Stop funding congregated mega projects for people with disabilities, and disabilities / seniors. Commit to typical housing options and neighbourhoods.
7. Where there are families that are willing to create a home in community the government needs to support with resources. These are cheapest, most effective models, and they are currently the least funded [in Ontario, Canada].
6) A coach or independent facilitator can support you to create and implement your vision for creating a home (and a life).
(Jessica Cave, Creative Housing Supports Coordinator at Bridges to Belonging in Kitchener, Ontario. Jessica supports people with developmental disabilities and their families who are looking to make the next move in their life.)
In episode #031, Jessica shares that she supports families by helping to figure out what is best for the individual. Her organization starts with the belief that people can live in the community, and that they have the resources and readiness to make it happen. In other words, they start from a place of capability and abundance, which fuels us as creators!
Jessica takes a person directed approach and works directly with families in the Waterloo Region helping them to take this new mindset, and she facilitates the family through creating their vision for housing. Once the vision is created Jessica helps the family to think about what resources the family already has, such as, friends, community, support, and financial. Then they will think about and take the next steps are to bring the plan to life!
7) Creating a Vision: The Best Home for the Individual
(Marg McLean, Executive Director of Community Living St. Marys, and her team have been helping people with disabilities create their home, and support solutions since the 1980's when people were leaving institutions.)
In episode #013, I ask Marg “When thinking about creating a home, what should families be considering?”
Marg shares that people are going on the waitlist [for housing in Ontario, Canada] without thinking, talking, and planning what an ideal home looks like for them. (Note: This is exactly what my family did at the start of our housing search for my sister. Your family is not alone if this is the situation you are in currently.) What works well is for families to come up with a vision of what would be a good home in community.
Marg provides 4 guiding questions to begin your thinking on creating a vision for home:
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Where do you want to live?
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What kind of building do you want to live in?
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Who do you want to live with?
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What supports will be needed for your home?
[Note: the free ‘Creating Your Home Workbook’ includes these questions along with other questions and exercises to guide you in creating your vision for your home.]
Also, in Episode #013 Marg shares the story of 3 individuals that her organization supported to create their home. I also share my previous experience of living with my friend, who has a disability. These stories might just give you some ideas and I recommend you listen to this episode!
8) No one can tell you the right answer. You have to figure it out for yourself!
(Keenan Wellar is the Co-leader of LiveWorkPlay, a developmental service agency that works to facilitate community connections and relationships in Ottawa, ON.)
In episode #017 Keenan shares his reply to families that ask him, “What should we do in housing?”
Keenan shares that this is a question is deeply personal, and it isn’t a question that he can directly answer for a question. So, when asked this question, Keenan takes a coach approach by asking a lot of questions in order to draw out the best answer for that family. A couple of questions that Keenan will ask are;
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Where do most citizens tend to live in your community?
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What are the barriers the barriers to living in 'ordinary' housing? Are they actually barriers?
Keenan also shares that he will guide families through a 'thought experiment' by considering what it would look and feel like to move in to an apartment, which is a typical first home for many of us moving out of our family home for the first time.
[This is included as an exercise in the free ‘Creating Your Home Workbook’]
9) Be a creator: Start conversations, build relationships, and uncover community resources.
(Alice Mainland is the mother to Michael Mainland, who has a developmental disability. Michael is 39 years old, has a home of his own, a job, and a life in community)
In episode #023 Alice Mainland shares the story of her family’s journey to create an ordinary life with her son Michael. What I am highlighting from my conversation with Alice, is the creator mindset that she brought to the challenges that her family faced.
In summary from my conversation with Alice, 2 months before her son with an intellectual/ developmental disability (IDD), Michael, graduated from high school, Alice realized they had a problem; there would be nothing for Michael once school ended, and one of his parents would have to stay home to support Michael. As a result, the family would drop down to a single income. Alice started making phone calls to various support agencies, local government, and basically anyone with a phone number that might be able to help. The people she called were willing to help! With the support of a few agencies the family was able to piece together support for Michael, which allowed the family to stay a two-income family. It was a patchwork, but it was a patchwork that worked because people wanted to help.”
Later in the podcast episode Alice shares, “At 29, Michael had the opportunity to move out of [his parents] home because of a conversation 4 -5 years earlier when I was searching for support for Michael.”
Alice shares, “You don’t know what resources are available to you until you ask. “
Resources:
Thursday Sep 13, 2018
Thursday Sep 13, 2018
Author and speaker, Donna Thomson, takes us on the journey of a caregiver.
In Episode #050, I had the pleasure of interviewing Donna Thomson and we dove into the topic of caregiving. Donna is an author and speaker on issues relating to family caregiving, disability and aging. She is a patient and family advisor on health research and policy. Donna teaches family caregivers how to advocate for care in hospital and in the community.
If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below or searching ‘Empowering Ability’ on your podcast player, such as, Apple Podcasts, Spotify, Google Play.
Before my interview with Donna I took the opportunity to read Donna’s first book, ‘The 4 Walls of my Freedom’, which really helped me to gain perspective on what it is be like to be a mother with a child that has medical needs. It gave me perspective on what it must have been like for my own mother, when faced with the medical challenges my sister experienced at a young age. Quoting Donna from her book, “Mothering a child with medical needs is a very public, but lonely endeavor.”
On the podcast I ask Donna, “Can you share your experience so that others listening can also understand your perspective? And, so other mothers maybe don’t feel so alone?
Paraphrasing from the podcast Donna shares, “My son, [Nicholas], has CP [cerebral palsy] and a complex disability. At 4 months [old] he was diagnosed, and it was like he became the property of health care and social care systems. We began to be assessed and I felt as though I was under a microscope. [I was] Grateful for the assistance because you feel like it is the key to the future success of your child, and you want to present as a competent parent. Then you learn when you present as a competent parent that’s reason for people to abandon you. If you seem to be doing well then people aren’t going to help you. In order to access the help you need at home you have to demonstrate failure as a parent. What do these assessments and scores about my baby say about me? Am I a success or failure as a parent? All of this brought the bond between my son and I closer and we would have very intimate moments when alone at home.”
I ask, “Do you feel that this pushed you into being a victim?”
In summary Donna replied, “Not exactly. We had to demonstrate to the system what our needs where, and to do that they had to show them that they were struggling.”
Finding Pleasure in Peeling the Potatoes:
In a previous conversation with Donna it came up that she had to find pleasure in peeling the potatoes and this connects directly to her book title ‘The Four Walls of My Freedom.’ On the podcast, I ask Donna, “Why do we need to find pleasure in peeling the potatoes? And, how do we do that?”
Paraphrasing from the podcast Donna shares, “I can’t leave my house, so how can I make a rich life of this? Watching the lady peeling the avocados next door through the window, [I admired] the way she was able to peel the avocado without breaking the skin was beautiful. I started thinking I can do that. Then I started thinking about how well I am peeling vegetables. It was sensual, secondly, I was feeding my children. I linked what I was doing with the purpose of what I was doing.
I started thinking about the tiniest things that I was doing as forms of meditation, and it made me happy. I wasn’t doing anything differently, I was simply looking at myself doing the jobs of feeding the kids, doing the laundry, and making the bed.
Locating the extraordinary in the ordinary. We have the benefit of the slow movement lived loud in our families. We do things more slowly, we are more contemplative, we do things more purposefully. There is opportunity in finding meaning and joy in the way we live.”
Everyone is a Caregiver.
Donna shares, “The word caregiver applies to everybody. At the end of the day we are talking about dependency needs met by someone else. A pet, a friend, we all look after each other even when we are perfectly healthy in the prime of our lives. You are not feeling good I will bring you over some soup. We don’t have anything in our society to say that caring for someone is okay. The pendulum has swung so far away from providing care [being accepted in our society].
In my first conversation with Donna, she helped me to realize that I am a caregiver. When I was honest with myself it was the truth, and it felt weird. My ego didn’t want to accept this language because of the societal stigmas that are attached to caregiving. At first, it made me feel weak. Upon reflection, and acceptance that I am a caregiver there is a strength that comes with being a caregiver. Caregiving is one of the most connected and real human experiences that we can have, it has been wired into our biology as we have evolved as an advanced species. As Donna shares, “Everyone is a caregiver.”
So I ask you, how are you a caregiver? I invite you to celebrate that you are a caregiver, and not to fight it or deny it. What are the benefits that caregiving brings into your life?
Donna's Life as an Activist:
Paraphrasing from the podcast Donna Shares, “My idea was do to a post mortem on our family experience and the support that we received, or did not receive, and to determine what was helpful and what was not helpful. I thought this would be useful for other families and policy makers. I became involved in inclusion. I became active in the family movement, and I became involved with the Ottawa affiliate for PLAN, which is all about citizenship.
I became aware of and met Indian economist, Amartya Sen, who developed ‘The Capability Approach’. The Capability Approach looks at how people can be supported by the community and the State so that they can have a life that they value. It is about individual choice and being supported to have a life that you value within circumstances of adversity. Sen was looking at extreme poverty in India, but I used this approach to look at my family.”
Donna used this approach in her book 'The 4 Walls of my Freedom’ looking at how people can make personal choices, express their personal values, and live in the community to do this. Donna and I further discuss inclusion, and I recommend you listen to this episode to hear these perspectives.
Donna's New Book:
I’m co-writing a new book with Dr Zackery White, a professor at Queens University in Charlotte North Carolina.
Donna shares, “Dr. Zackery White is writing about Caregiver identity and how it is so difficult to express the transformations that happen when giving high levels of care to someone. Lots of things grow and lots of things die when you become immersed in giving care to someone.
Giving people language to create the narrative to understand your life in the now.
My part of the book is the what’s next. What can you do to be an advocate and take action; personal support networks, what are the assets in your community [asset based community development], and online tools including support groups. These are actions you can take to thrive in situations of adversity. It will be titled something like ‘Transformations in Caregiving’ ”.
I thank Donna for coming on the podcast and sharing her deeply personal experiences, and her insights on caregiving. Thank you for doing the work you do Donna!
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
Love & Respect,
Eric Goll
Resources:
Donna's Blog: The Caregivers' Living Room www.donnathomson.com
Book ‘The 4 Walls of my Freedom’– Available at any major book seller.
Facebook Group - The caregivers living room
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tags:
#Caregiving
#Donna Thompson
#WeAreAllCaregivers
Thursday Aug 23, 2018
Thursday Aug 23, 2018
Dr. Yona Lunsky discusses state of mental health and developmental disability, how to notice mental health challenges, and different treatments.
In this episode, I welcome Dr. Yona Lunsky on to the podcast to talk about developmental disability (DD) and Mental Health. Dr. Yona Lunsky is Director of the Azriei Centre for Adult Neurodevelopmental Disabilities and Mental Health, and Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at CAMH. She is Professor and Developmental Disabilities Lead in the Department of Psychiatry at the University of Toronto and Adjunct Scientist at the Institute for Clinical Evaluative Sciences (ICES). In this episode we discuss Dr. Lunsky’s journey into the field of mental health and developmental disability (DD), the state of mental health in the developmental disability community, how to notice mental health challenges, and the different treatment options available.
Below is a summary of some of the highlights from my conversation with Dr. Yona Lunsky. If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below, or searching ‘Empowering Ability’ on your podcast player, such as, Apple Podcasts, Spotify, Google Play.
On the podcast, Yona shares that she has an older sister who has a DD, and she tells us about her family experience. She also shares what led her down her career path to support people with developmental disabilities experiencing mental health challenges. Take a listen to the podcast to hear more of Yona’s Journey.
Why should we be talking about health in the Developmental Disability (DD) community?
Paraphrasing from the podcast, Yona shares, “When we are healthy we get to enjoy our lives. When we are unhealthy it restricts us; work, where we can live, how much money it costs day-to-day [living expenses], and the activities we can do. We know people with DDs are less healthy, and have more health problems than people that don’t have DDs. There are lots of reasons why they [People with a DD] are less healthy. It isn’t necessarily the disability, the disability itself is not a sickness, but how they manage their health, and the barriers that come up for people with DDs can impact their health.”
Mental Health in the DD community.
Yona shares, “The likelihood of having a mental illness is much greater for a person with a DD than without. In the general population 1 in 5 people experience mental health challenges. Through H-CARDD we looked at the number of people under 65 [years of age] with a DD that were given a psychiatric diagnosis over a two year period, and found it was 2 in 5 people. These problems are more common for people with DD, and they are less likely to get the help that they need. People with a DD are less likely to understand their emotions, and [are less likely] to be able to put language to it. This puts them at a disadvantage.”
What Does Dual Diagnosis Mean?
Having a DD and also having a mental health problem at the same time.
Diagnostic Overshaddowing
Yona explains, “If someone with a DD presents with symptoms of depression, the clinician might but look at the person and say oh that is your disability, and miss that the depression is actually there, and it may go untreated.”
Why might mental health be a larger challenge for people with a DD?
Yona explains, “What makes us feel healthy? Are we engaged in meaningful activities?, Do we have strong friendships?, Are we included?, Do we have opportunities to contribute?. People with DD are at a disadvantage here and this all impacts mental health. If the person themself can’t recognize there is a problem, then it becomes up to others to recognize there is a problem and we are worse at recognizing there is a problem when someone has a DD. By the time we do notice, it can be pretty late in the game, and this makes it even more difficult to help them.”
I ask, so what are the antidotes to poor mental health?
Yona shares first there are things we can do to prevent mental health challenges:
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Things like bullying are clearly related to mental health, and we can give people skills so they know that to do in these situations.
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Building positive social relationships. These are reciprocal relationships and they are not stressful or demanding too much of you.
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Doing things that are meaningful and important for you.
Yona explains the importance of taking action on these prevention steps for young adults with a DD, “There are many people who have mental health issues who are hospitalized in young adulthood. I don’t think this is a coincidence that this happens since when you finish school your activities, your friends and the people who know you really change. Not having anything to do during the day, and watching tv in the basement, losing friends, failing because there isn’t the right supports, all of this impacts your mental health.”
How do we help someone that might be experiencing a mental health challenge?
Yona shares, “Be a detective and notice what has changed. What is different now than before and be able to provide examples in daily life. It is important to notice the change, and it is easier to treat when there is a small mental health issue emerging.”
Yona promotes using the ‘HELP’ model when examining an individual’s mental health.
Yona explains the model on the podcast:
H - Health. First we need to look at what is going on in terms of health that could have changed. Is there a physical change? One thing that looks like depression is hypothyroidism, but this has nothing to do with depression. Constipation is one of the biggest issues leading to aggregation and discomfort for people with DD. And, this is often missed because the person might not be able to put the language to it.
E - Environment. What is going on in the environment? What are the supports and expectations right now? Are things stressful? Too demanding? Are people expecting too little? Is there a good match between her situation, and what she feels she is able to do? If the match is poor than address it.
L - Life Events. What has happened in the past that might be contributing to this issue? Bullying, ostracized, loss (experiencing grief), etc..
P - Psychiatric. Once health, environment, and life events are examined - could it be depression or anxiety? Treatment for these mental illnesses could include engaging in activity, seeing a counselor, medication, etc.
Families can use this model in order before going to get help from a medical provider, and families can use this model with their mental health professional.
Treatment with Medication:
Paraphrasing from the podcast Yona shares:
“The research shows that the likelihood of being prescribed several medications at the same time is not small [for people with a DD]. These medications interact with each other, and cause other problems. These medications can help, but they can also harm.
In Ontario Canada, medications are paid for (antidepressants, etc) under the disability program. But, other services such as psychotherapy are not covered. The likelihood of fulfilling prescriptions are high, and the most commonly prescribed drug to people with DD are not for cholesterol, diabetes, or asthma, they are for psychiatric issues. The most commonly prescribed drug are antipsychotics. These are pretty heavy duty drugs which require a lot of monitoring.
If doctor prescribed medication to me, I would go on the computer and look at it, get a print out from the pharmacy, I would look at the side effects, and tell the doctor right away if I was noticing any of them. [However,] people with DD aren’t always able to notice the side effects, or to understand why they are taking the medication.”
** Disclaimer: Do not just stop taking any medication that your doctor may have prescribed to you. Let this be a prompt to you to have a conversation with your doctor about your experience using your medication(s).
Let’s Talk About Mental Health
Yona’s final message is, “It is important to talk about it [mental health]. If we don’t talk about it we don’t solve anything by avoiding the problems. Mental health is just as important as any physical aspect of our health.”
On the podcast we discuss some practical ways on how to start the conversation on mental health. Take a listen!
If you received value from reading this blog or listening to this podcast episode, consider sharing it with someone else you feel would benefit. Coming soon there will be a way for you, or your organization, to contribute to this work. Stay tuned for the details.
Love & Respect,
Eric Goll
Resources:
- Talk to Dr. Yona Lunsky on Twitter @yonalunsky
- H-CARDD Health Tools for people with disabilities and caregivers
- More on The HELP model
- Dual diagnosis resources from CAMH
- A Family guide to dual diagnosis
- Video of Dr. Yona Lunsky discussing the HELP ideas
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Jul 31, 2018
Tuesday Jul 31, 2018
Ted Kuntz shares his journey of personal transformation as he realized the who he wanted to be in the world with his son Joshua and with others.
Ted Kuntz is a gifted psychotherapist and the author of the best-selling books, Peace Begins With Me and 8 Weeks to A Better Relationship. Ted has a Master's Degree in Counseling Psychology and more than 25 years experience as a clinician and a consultant. Much of Ted’s wisdom has come from his personal journey as the father of a child with severe disabilities. Ted's journey with his son Joshua taught him how to make peace with life and to take full advantage of the gifts and opportunities life offers.
Below is a summary of some of the highlights from my conversation with Ted. If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below, or searching ‘Empowering Ability’ on your podcast player, such as, Apple Podcasts, Spotify, Google Play.
I was fortunate to meet Ted at Partner’s for Planning’s Art of Resilience event this year, where I told Ted that I saw his talk the previous year at the Art of Belonging. It was one of the most inspiring talks that I’ve experienced, and Ted’s stories went straight to my heart. When I met Ted I shared my gratitude for his talk and vulnerability. I also shared that I had purchased his Book “Peace Begins with Me.” But embarrassingly, I hadn’t read it yet. I invited Ted to join me on the podcast, and I promised myself that I was going to read his book. We both kept our promise, and I am happy to bring you insights from Ted Kuntz!
Ted’s Journey (so far):
I’ve paraphrased Ted’s story from the podcast episode below and quoted some important conversations Ted shares.
“It has been a very challenging journey, but very rich journey. It took me while to embrace the rich journey. At 5 months of age my son Joshua was damaged by a vaccine shot and developed an uncontrollable seizing disorder resulting in a neurological injury. This injury resulted in 24-hour care for the rest of his life and significant disabilities. In February 2017, Joshua passed away.”
Josh transformed Ted as a father and human being in ways that Ted could have never imagined. I ask Ted on the podcast, “Are there moments or experiences of transformation that you can share with us?”
Ted shares that there are two experiences that he has identified as the most transformative, the first was when Ted went to see a Physic:
Ted asked the physic: “Will my son live?”
Physic: “Have no fear the son will outlive the father.”
Ted: “If my son will live, what will he be when he grows up?”
Physic “Your son will be what he already is, and that is a teacher.”
Ted didn’t understand how his son would be a teacher at first, but the words sat with him. What he came to realize is that Joshua was here to teach him about being a human being. He was here to teach acceptance, forgiveness, gratitude, and working through human challenges.
The second transformative experience that Ted shares on the podcast is his daily ritual with Joshua. When Ted pulled into the driveway after work he would see Joshua at the window saying, “Hi Dad”. When Joshua wasn’t at the window to greet Ted, Ted knew that Joshua wasn’t having a good day. On this day, Ted pulled into the driveway and he stood there looking at his son in joy, and a voice inside of Ted's head asked him this question, “When your son looks through the glass at you what does he see?”
Ted reflected on this powerful question, and Ted found the truth; Joshua sees a father who is angry, afraid, and a father who is rejecting his son. Ted committed that day to make peace with his situation, to accept it, to claim his joy, and to fall in love with the son he had. That was the day Ted’s life began to change.
Insights:
Eric shares, “For us to have these transformations we need to embrace these moments and let ourselves bring these questions and experiences into our consciousness to find our truth.”
Ted shares, “The transformation came out of an intense amount of suffering. Suffering can be one of the gateways to wisdom.”
I ask, “How do you shift out of suffering state to a state of joy?”
Ted replies, “Take responsibility for emotional, physical, mental, and spiritual state of being. We often give away our power – something else is responsible for our happiness, peace and joy. [For example,] I’ll be happy when Josh stops seizing. If I hold the story that my happiness is dependent on Joshua’s seizing stopping, then I couldn’t be happy. We need to claim ownership of our way of being in the world. I make me happy, I make me sad, I make me angry. Why would I make myself angry? It doesn’t serve me and the rest of humanity by staying in that [angry] state for a long period of time. I can release it any point.”
“I believe when we are operating at our highest potential as human beings that we are living life as creative beings. That we are creating the next moment. Unfortunately, I spent the first 45 years of my life as a reactive being.”
The Hidden Gifts of Disability
Ted Shares, “It [disability] challenges us in a way that we are forced to respond. At first it moved me to those darker places, but I’ve since learned there is a healing that comes about when there is an acceptance. I’ve chosen to live in peace and joy, because my son deserved that. It changed me as a father, a husband, a brother, a son. It made me a better person.”
Ted shares the story of Joshua’s grade 7 teacher:
Paraphrasing from the podcast Ted shares, “When Joshua was entering grade 7 there were 2 male teachers, who were athletes, selecting students for classes for the upcoming year. They decided to do a coin toss for who would pick first. The teacher who won the coin toss looked at the list of students and selected Joshua as the first pick. The other teacher asked, ‘Why Josh? He requires a wheel chair, has an uncontrolled seizure disorder, he has many other needs.’ The other teacher replies that he notices how the kids excitedly greeted Joshua in the morning, how they gently took off his coat, how the other kids altered the rules of the game so Joshua could play at recess, how the children where there laying on the mat with Joshua as he recovers from seizure. If Joshua is in my class it will make it a kinder and gentler place for everyone.”
This teacher helped Ted see Josh’s gifts. Ted was now able to look at Josh with a different set of eyes.
Ted shares, “Is the glass half full or half empty? It is both. Do I look at the full parts, or do I look at the empty parts? We have been socialized to believe that success looks a particular way. What people like Sarah [my sister] and Joshua do is that they remind us that there are other qualities to aspire to. There are things that I wasn’t going to learn from a book, I needed to be in relationship with a person more vulnerable that myself. This is a challenging journey. Let’s not just look at the parts that are difficult, lets also look at the gifts that can be realized out of this journey. Let’s not lose that opportunity to experience some significant transformation as a result of this life experience.”
To embrace this mindset that everybody is a gift to us, Ted plays a game with himself. He asks himself, ‘Who is going to show up today?’, and ‘What gift do they have for me?’, ‘What gift do I have for them?’. It forces him to appreciate everyone he interacts with.
In this episode, Ted also shares the native story of two wolves - the negative and positive wolves fighting our hearts, a tool to find more joy in our lives, and we discuss David Hawkings map of consciousness. Listen to the podcast for more on this!
Ted leaves us with this message to consider:
“Your way of being is actually more important than what you do. We would be better off if we made 'To Be:' lists every day, rather than 'To Do:' lists. Be gentle and kind to ourselves. We are on a journey of development. One of the things that I believe is that we don’t make mistakes, we actually make the best decision available to us at that moment with the information, skills, and knowledge that we have.”
I am grateful for the stories, insights and rich conversation Ted gave us.
If you received value from reading this blog or listening to this podcast episode, consider sharing it with someone else you feel would benefit. Coming soon there will be a way for you, or your organization, to contribute to this work. Stay tuned for the details.
Love & Respect,
Eric Goll
Resources:
Book: Peace Begins With Me
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Wednesday Jun 06, 2018
Wednesday Jun 06, 2018
Brian shares his story of multiple health challenges and family adversities, and his insights about how we can re-write our story and take control of our lives.
In this episode, I have an engaging conversation with life coach, Brian Raymond King. Throughout Brian’s life he’s been a student of adversity as he experienced multiple health diagnosis including; cancer, ADHD and MS – as well as going through a divorce, and being a single parent to three children with ADHD. Brian shares his story and his insights about how we can re-write our story and take control of our lives.
On the podcast Brian shares:
“It’s a matter of doing what you can with what you’ve got. In situations like mine, you don’t just give up on life and let it pass you by because you can’t do everything each day that you can do on your best day. Some people use their best day as their standard, but that is ridiculous because life ebbs and flows. Depending on where I’m at that day, I think about what can do and I show up and do 100% at it.”
How have you bounced back from each challenge in your life?
Paraphrasing from the podcast, Brain Shares:
“With each new diagnosis there is that oh crud moment. This is usually brief. But, grumping and groaning will not change the situation. Then I shift to what do I need to know? What resources are available? What books do I need to read so I can manage this? At some point being resourceful just stuck.”
What tools do we have in our toolkit to be resilient?
Paraphrasing from the podcast, Brain Shares:
“First off, there is noise that makes it difficult to use the tools [we have]. One of the most annoying offenders is the ‘shoulds’. It [life] should be this way, or it should be that way. Once we stop ‘should’ing’ all over ourselves, we can take the first step toward a solution. Maybe you don’t know what the solution is yet, but you can start problem solving.”
What about when the problem seems so bad, or too much to handle?
Brian asks his coaching clients, “Do you honestly believe that? Or, is that honestly true?”
Brian helps his clients think through if they want to be a victim of the situation or if they want to be resourceful and take charge by asking questions like:
“Do you want to be helpless or do you want to be in charge? What can you be in charge of right now? You can be in charge of your thoughts.”
In my coaching practice I often ask clients, “What assumption are you making?” This is a powerful question to help us realize the stories we are creating based on incomplete information. (Also, our assumptions tend to lean toward being negative.)
Mindset vs Skillsets:
Paraphrasing from the podcast, Brain Shares:
“You can have the best tools in the world [skillsets], but if you don’t believe in yourself [mindsets] you might not even want to use those tools [skillsets].
Brian believes we must first develop or mindsets, which is comprised of our belief systems to get the most from our skillsets.
I ask Brian, How do we develop our mindsets and beliefs?
Brian shares, “Studying biographies. Don’t just listen to what they did, it is important to look at the decisions that they made, and the beliefs they hold. It is their beliefs and thoughts that led to their results. Try adapting to that belief for just a day - I am going to act as though this belief is true, and I am going to see the world through this lens. For example, you are a much different person if you believe that people are good at heart, vs people are just out there to screw you over. Things are first created in the mind, then in the real world.”
Who is one of your most influential mentors?
Brian shares, “Victor Frankl, who wrote 'Man’s Search for Meaning'. You can choose your attitude no matter your circumstances, and each person has the internal power to find inner meaning in any situation. He gave me perspective on how much I was self-pitying. I decided how I was going to face how I was going to feel and how I was going to choose to think.”
On the podcast, Brian discusses the concept of Hacking your Resiliency. Take a listen to the podcast to hear these valuable insights.
Brian leaves us with a challenge to consider, “Whenever a problem shows up one question you can ask yourself is, ‘What’s good about this?’ When you ask this question you immediately begin seeing what opportunities are available to you because that problem exists.
A big thank you to Brian for joining me on the podcast and sharing his insights! You can learn how to connect with Brian in the resources section below.
Love & Respect,
Eric Goll
Resources:
Brian's Website: Mindsetbeforeskillset.com
Connect with Brian on Facebook
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Wednesday May 23, 2018
Wednesday May 23, 2018
Guest Lynne Seagle shares how her organizaton was oppressing people with disabilities, and what they did about it.
This week’s guest is Lynne Seagle, CEO of Hope House Foundation, a not-for-profit organization started in 1964 by family members whom had sons and daughters with developmental disabilities in Virginia, USA. These families wanted something other than an institutional living for their loved ones, so they started the first group home in the state of Virginia. Hope house grew to run 13 group homes by the 1980’s, when they learned that the people living there actually didn’t want to live in group homes, and they did something about it. Today, Hope House supports 125 people that live in their own home, with a staff of about 260 people, half of those being part-time.
Lynne has been with Hope House for 38 years. She wants to create a better world for people with disabilities that are isolated or not valued, and she said, “there is no stopping point – it is a long journey”.
Finding Out People Didn’t want to Live in Group Homes
Paraphrasing from the podcast Lynne shares that, “…finding out people didn’t want to live in group homes started with a survey. The survey asked the question, ‘Does everyone like where they are living?’ Everyone said yes. It was odd to ask 120 some folks a personal question and get the same answer. We then re-worded the question to, ‘How do you want to live?’. And, the flood gates opened. People answered 1 of 3 ways, from most dominant to least; 1) I want a home of my own, 2) people wanted a job (most people were in day programs or workshops), 3) friendship and romance.
Lynne continues, “We [Hope House] had defined excellence as meeting all the rules – paperwork was clean, no employee grievances, well-kept homes, low staff turnover. We were looked at as the model in Virginia. BUT, when we gathered these themes [truths] we reviewed our program plans and not one program plan addressed these needs of people. This was a daunting realization for our organization.”
People Were Being Oppressed in Group Homes
Lynne Shares, “We started meeting people individually and we started realizing we didn’t know them. When you support someone in a group you only know them in the context of the group, not really an individual. It was quite astonishing to us. After we closed the first group home we started to study oppression (groups that have been oppressed); American Indians, women, people of color, the LGBT community. The book ‘Walking with the Wind’ by John Lewis was influential for us. We noticed all oppression looks the same, regardless of the group – keeping people poor, limitation of choice, very few freedoms.”
Hope House had discovered this truth that they were oppressing the very people they were there to serve, and they made a decision to no longer run group homes. The last of the 13 group homes closed 22 years ago, and everyone they support now has a home of their own.
Lynne shares, “[Hope House is] proud of this, but I’m surprised that this is still something to talk about as something new or something that should be considered in 2018.”
It was just the right thing to do.
At the time there were no examples on how to do this, and funding was set up in a group model. This was the hard road to choose. Lynne shares, what kept them moving forward is asking the question, “Why do people in disabilities need to live in groups when I don’t have to? We looked at the humanity of it, not the money, or the skill of the person.”
We are Responsible for the Oppression of People with Disabilities.
Paraphrasing from the podcast, Lynne shares, “What business looks exactly as it did in the 1970’s and has consistent oppression? When you look at social justice change in almost every case the people being led it were the people being suppressed. When you look at the nature of developmental disability, the people being oppressed need our support to lead a revolution, and we would be revolting against ourselves. We need to step up! Do we want neighborhoods that are being inclusive or not? There is a huge group that is being left out.”
Insight from Lynne: “We need to change, not people with disabilities that need to change.”
How Do We Bring People Out of Oppression?
Lynne shares, “What we did is gave everyone a home of their own. No one wanted a roommate, except for people that were romantically involved. This gave people a lot of control. We chronically underestimate people with disabilities. When given the opportunity a lot of people with disabilities flew. After that, a focus on employment. Economic power opens up more choice. Then we focused on connection and belonging. Not having a service life, but having your life.
Reconciling our Beliefs
Paraphrasing from the podcast Lynne Shares, “We had a prejudice or bigotry. When you value intellect and beauty …. people with disabilities don’t fit those values. When you lift that up you realize that you don’t believe that people with disabilities are your equal. We had to come to terms with that. That was internal work that everyone of us had to do. We believed the level of disability related to how much you could direct your life. We had to get rid of that stereotype. We support people that are non-verbal, that use a variety of devices [to live in their own home]. We now have a belief to the core that every single human being can direct their own life. When people are in their own homes they are looked at differently. The universe has its own way, without us controlling us. The natural rhythms of life start to happen then people have their own homes.”
Lynne shares the story of Willy and how he proved them wrong in his capability to direct his own life. Hope House went from providing $160,000/ year of support to $10,000 per year in support as Willy got his own place and started to flourish.
We are Oppressing People with Disabilities
Upon my reflections, we are oppressing people that are living in grouped settings, but people don’t have to be living in an institution or group home to be oppressed. People with disabilities are being oppressed by their families, their friends, their supporters and by society at large. Lynne shares with us the common signs of oppression; keeping people poor, limitation of choice, very few freedoms.
When I examine my own life, I’ve been guilty of keeping people oppressed. For example, I’ve played a part in keeping my sister (who has a disability) poor by not getting her access to her bank account and helping her learn her economic power, by limiting her choice or taking decision making power away from her, and by not acting to get her out of isolation at my parents home.
There are very simple steps I’m taking to empower my sister, like getting her a bank card and assisting her with online banking, by standing beside her to play a supportive role in making decisions, and creating and upholding a big bold vision for her to move out of my parents’ home and into a home of her own.
Once I became conscious to my beliefs, and how I was being oppressive to others I had to make a choice. I could choose to continue to suppress these truths and continue on with the status quo, or I could roll up my sleeves and do the hard work of examining my beliefs and change my beliefs to put people with disabilities on equal footing and to support them in breaking free of oppression. I chose the later, which will you choose?
Lynne leaves us with this message, “It is all of our responsibilities to work on ourselves around the issue of equality, regardless of disability, and to take action for those left on the sidelines."
Love & Respect,
Eric Goll
Resources:
Hope House Website: https://www.hope-house.org/
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tuesday May 08, 2018
Tuesday May 08, 2018
Guest Joscelyn Duffy shares her strategies of resiliency through her recovery from a life threatening illness, & we discuss how to be a compassionate supporter.
Joscelyn Duffy is a communication and contribution strategist who travels the world serving leaders in the development of their messages, model and methodologies. At the young age of 26, Joscelyn went from high potential employee in the financial sector and marathon runner to being bed ridden for 2 years with a life threatening case of lupus. During these two years Joscelyn slowly recovered but was only left with 2 to 3 good hours per day. Joscelyn shares, “This was a shock and massive unexpected shift in my life.” Joscelyn found that she had to make the best of her 2 to 3 hours, especially compared to when she had 16. She was left asking herself, “How do I push through with mental fortitude?”
Paraphrasing from the podcast Joscelyn shares, “When my illness happened I wanted to hold onto the way life was and went right back to work from bed.” She found that she couldn’t do what she was once able to do. She said to herself, “If I am listening to life I’ve got to get over what my head is telling me, and there is something else I could be doing.”
This new thinking led to acceptance of her current situation, and a focus on what mattered most to her – being active with other people, and engaging in her passions; reading, writing, and painting. There was a lot of healing that came through writing a book on her story titled, “Unshakable to the Core.” This led to Joscelyn’s current career as a ghost writer, helping other people to have their voice heard.
Joscelyn’s Insights on Resiliency:
For Joscelyn, it was simple; compassion and small actions.
-
Simply have compassion for yourself.
-
Small action; It is going to take small steps to get to where you want to go. When Joscelyn was learning where to walk, she had to start with the first couple of steps. Every step is like going up a staircase toward your ultimate goal.
How can we support someone that is experiencing a challenge?
“If you want to make god laugh, you tell him your plans.” – Woody Allen.
Paraphrasing from the podcast Joscelyn Shares, “Life rarely ever goes the way we plan it. We take ourselves way to seriously. We can take a light-heart into these situations as a supporter. Try to encourage flexibility. Especially when you are working with a person that has to do something a certain way, ask them to just try it once.”
Empathy Vs. Compassion
Something I have personally been struggling with is being empathetic of people I am supporting, rather than being compassionate.
So, why is this a problem?
Being empathetic is feeling and taking on what someone else is feeling or walking in their shoes. Or, as Joscelyn defines it, feeling the pain of another.
Vs
Being compassionate is understanding what someone is going through, but not taking on their emotions. Or as Joscelyn defines it, wanting help to alleviate the pain and suffering of others.
The challenge with being empathetic is that our ability to be helpful is at risk of being diminished by taking on the emotions of others, where as being compassionate allows us to stay grounded in our own perspective and to support the person to move forward.
The Compassionate Supporter is a More Effective, and Happier Supporter.
In 2016, Michael Poulin and associates at State University of New York at Buffalo conducted a study to see the impacts of taking two different perspectives as a supporter; a helping imagine-self perspective taking (ISPT) (i.e. walking in their shoes perspective), and an imagine-other perspective taking (IOPT) (i.e. seeing through their eyes perspective).
The study found that ISPT resulted in relative threat, whereas IOPT resulted in marginally greater relative challenge. This effect was mediated by increased perceived demands of the situation. Moreover, self-reported distress was only associated with threat during ISPT, but not during IOPT.
Source: https://www.sciencedirect.com/science/article/pii/S0022103116303961?via=ihub
So, what does this mean?
When we walk in another's shoes as a supporter, we take on threat and our stress levels increase. When we look through the other person’s eyes there is only a small impact on us - less stress. This study tells us that we can be a more effective supporter by being compassionate vs empathetic.
Putting Compassion into Practice:
Putting compassion into practice is something I am working to develop myself. Joscelyn offered a practical model, ‘The 4 P’s of Compassion’, to understand compassion that I found very insightful, as well as a couple of tools we can use to practice being compassionate.
"The 4 P's of Compassion"
Presence: Being there fully the moment with the person
Perspective taking: Seeing the world through their eyes, without fully stepping into their shoes
Patience: Being patient with yourself and those you serve.
Progress: support for forward progress – the small steps also count.
Tools to Practice Compassion:
Being compassionate is about perspective taking. As stated in Michael Poulin’s study, it is more beneficial to try and see things through another person’s eyes, rather than trying to walk their shoes. When we look through another’s eyes and stay grounded in our own two shoes as the supporter we have decreased stress, and increased health and wellbeing.
We aren’t helping others when we are taking on what they have.
Sounds great! How do we do this?
Joscelyn shares, “You can think about it like watching a movie. When watch a movie you might laugh, smile, or cry, but when the movie is over you haven’t taken that on (i.e. those emotions don’t continue to impact you). You have learned from it, you are better for it because now you see a different perspective, but you don’t internalize it. It is a dance.”
Joscelyn is also a Reiki practitioner, and she had to learn how to stay in own her own strength and energy. She shares a strategy that she uses, “I see my favorite colour around me (picture being in a bubble of colour), and positive energy can come in, and the negative energy can’t penetrate this shield. This allows us to stay in our own energy while supporting another."
On the podcast, Joscelyn also shares how to find your own voice, which is something Joscelyn has a great deal of experience supporting others to do as a ghost writer.
A big thank you to Joscelyn for sharing her story and insights on resiliency and compassion!
Love & Respect,
Eric Goll
Resources:
Joscelyn’s Website: Joscelynduffy.com
Joscelyn’s Books: Click Here
Joscelyn’s Blog: Click Here
Read more on perspective taking: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Thursday Dec 07, 2017
Thursday Dec 07, 2017
Dr. Jen created the The Umbrella Project which embodies the idea of using challenges life throws at us as an opportunity to learn new skills and cope.
In this week’s episode of the Empowering Ability podcast, I had the pleasure of chatting with good friend, Dr. Jennifer Forristal (aka Dr. Jen). Dr. Jen helps us to understand the approach a Naturopathic Doctor (N.D) takes with a patient, educates us on gluten/dairy/ egg free diets, shares common questions and answers from the developmental disability community, and she shares her amazing work with The Umbrella Project.
Let it rain – The Umbrella Project
One of my favorite quotes is:
“Life isn't about waiting for the storm to pass. It's about learning how to dance in the rain.” —Vivian Greene.
Dr. Jen has created the The Umbrella Project which embodies the idea of using the challenges that life throws at us as an opportunity to learn new skills, and develop our ability to cope.
Dr. Jen, Founder of the project, shares, “The Umbrella Project is a paradigm that I have built to help people better understand the world of coping, positive phycology, and all of the skills that we use to have better wellbeing. The skills like self-compassion, resilience, mindfulness, and purpose have same research outcomes; they help us take on life and thrive no matter what is happening to us. I call it The Umbrella Project because I think about the stresses of life like rain, they are inevitable and we try to avoid them, but we are not going to. It is better for us to think about how to prepare for those days than it is to try and eliminate those days from our lives. We take the stress and the challenges of life and use it as a tool to build coping skills – what we call umbrella skills. I’ve built The Umbrella Project to do this, and we have brought it into schools to teach kids, and we are now educating parents as well.”
How Does The Umbrella Project Teach Kids?
Paraphrasing from the podcast Dr. Jen Shares:
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We share the language, and help kids understand what the skill is.
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We show kids the outcomes of those skills and tell them the research. It is amazing what kids can absorb!
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We help them go into the world and see these skills in action. For example, when you see someone being resilient it makes you more resilient yourself.
On the podcast, Dr. Jen shares how they are teaching parents these skills.
What Does a Naturopathic Doctor Offer?
Paraphrasing from the podcast Dr. Jen Shares:
Naturopathic doctors (N.D.s) are primary care providers in Ontario. N.D.s have the same training same as a medical doctor for first 2 years including; diagnostics, blood work, etc.. Where we branch off is that we use more natural styles of treatment such as, exercising, eating better, taking the right supplements, stress reduction. There is so much research on how these interventions are effective at treating many different conditions.
Naturopaths work to understand the cause of what is going on, rather than just focusing on symptoms. A N.D. spends a lot more time with a patient, and we work toward bringing that person to an optimal state of wellbeing. For example, if someone had a skin condition we would look at things like what is going on with their gut health, not just put a cream on the rash. OR if someone was experiencing anxiety we would spend a lot of time looking at the lifestyle things that would help them come out of that state of anxiety and address the underlying things, rather than just give them a medication to alleviate the symptom of anxiety.
Gluten / Dairy Free Diets:
Paraphrasing from the podcast, Dr. Jen shares:
There isn’t a cookie cutter approach, and recommendations are always individualized. The research shows a certain percentage of the population responds really well to gluten free & dairy free diets. Eggs come up often as well. It is worth trying this type of diet and seeing if it works for you. You can start to see evidence of positive changes in as little as 1 to 2 weeks. It isn’t something that you have to commit to for a life time. Look for noticeable changes, you might not see the full impact of the changes, but you can start to see results. There is often gut symptom that comes up from eating these foods, and it is easy to see changes in these symptoms.
Are There Common Questions You Get from the Developmental Disability Community?
Paraphrasing from the podcast, Dr. Jen shares:
Often, when I see these families biggest thing that I see is that parents get very tired and burnt out. The parent brings in the child, and focus shifts to the parent. We discuss getting better balance in their life. If the parents are healthy then it seems to trickle down to the rest of the family.
When it comes to kids, sleep is a big thing. If one person isn’t sleeping then the whole family can be impacted.
On the podcast, Dr. Jen also discusses the importance of sleep, and provides sleep tips. She also shares how to find the best N.D. for you.
A huge thank you to Dr. Jen for coming on to the podcast and sharing her amazing work. If you are interested in learning more about The Umbrella Project, Dr. Jen would love to talk with you about it.
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
The Umbrella Project Curriculum and Newsletter: Click Here.
Email: Drjen@umbrellaproject.co
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Thursday Nov 09, 2017
Thursday Nov 09, 2017
Discussing bio medical (non-medical) approaches to well-being for people with disabilities. This week’s podcast/ blog is a rebroadcast from Episode #026 with Janet Klees.
Janet Klees has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Until recently, she has been coordinator with the family-governed Deohaeko Support Network for over 20 years. She is the author of three books which are directly rooted in the Deohaeko experience, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world. Currently, Janet is the Executive Director with a family support organization, the Durham Association for Family Respite Services.
Bio- Medical (non-medical) Approaches:
The Durham Association for Family Respite Services has started a family group to discuss and learn about the impacts of diet, exercise, and mindfulness as alternatives to medication and behaviour management approaches. In my opinion, these are common sense approaches that can be explored at little cost that can get down to the root cause of symptoms or behaviours that a person is experiencing. Peter Marks, Founder and Director of the Centre for Conscious Care, got Janet and these families thinking about these integrative approaches and you can find additional resources on his website.
Paraphrasing from the podcast, Janet shares:
One of the things we have started to learn about it diet. Families have started to experiment with eliminating or reducing gluten and dairy from their child’s diet, and they are sharing the results with other parents. There is a lot of research about gluten and ADS, but this isn’t just for people with ADS, it is helping people with other developmental disabilities.
(Note: In a conversation with Dr. Jennifer Forristal N.D. at a Waterloo Region Family Network Conference, Dr. Jen shared that this type of dietary change can be overwhelming for a family pull off. Dr. Jen shared with the group, to start small - start with trying no gluten or dairy for just one week. With a one week trial you can notice changes, and if those benefits are great enough you can decide to continue, or not.)
Once people’s diets are in order we can start to look at other things. One of these things is sensory integration. A person might either be over stimulated or under stimulated. There are techniques, such as using a small trampoline for 20 minutes, that are effective in helping people be calm or focus.
People are also interested in medical marijuana, and the potential benefits that it may have - especially with epilepsy. We have some families experimenting with this under the care of doctors.
We are also looking at mindfulness and bring mindfulness practices to people with disabilities. However, it isn’t just thinking about the person with the disability, it is thinking about the team that supports them. The person supporting needs to be calm and present in the moment.
If we start at a biological end then we might be able to get to the root cause of the symptoms someone is experiencing. Naturopathic doctors can be a good resource to start to think this way, make sure to find a naturopath that is familiar with developmental disabilities.
Peter Marks, Director of the Centre for Conscious Care, is joining us on an upcoming episode to teach us more about these approaches. Check out the Conscious Care website or you can pick up the book on Conscious Care from Inclusion Press to learn more.
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Peter Marks: Conscious Care Website- http://centreforconsciouscare.ca/
Learning events In Durham Region: Click Here
Contact Janet Klees: janet@legacies.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Wednesday Sep 20, 2017
Wednesday Sep 20, 2017
Bill Hiltz shares his story of how he was mistreated and caged in an institution as a toddler, freed by loving people, and how he has grown into a leader advocating for positive change for people with disabilities.
In this podcast episode, I had the pleasure of interviewing ‘Team Bill’, including; Bill Hiltz, and his supporters Joyce Balaz and Arn Row. Bill is a disability advocate that is promoting positive change in the Ontario political arena by sharing what it is like to live in his shoes. Bill is non-verbal, and he is impacted by an uncontrolled seizure disorder that can rule his life.
Bill Hiltz’s Story
Paraphrasing from the Podcast Joyce and Arn share:
Joyce: “When Bill was born there were complications with the birth that led to Bill’s seizures. At the time, his family didn’t have the resources and supports to provide for Bill, and Bill went into foster care system at 1.5 years old. Bill went into a number of foster families, in and out of the hospital, and then ended up at Christopher Robin, which was an institution in Ajax, Ontario. The institution was closing when Bill was 8 years old, and a family who had already adopted another child came back to the institution and adopted Bill.
Arn: “It is important to share Bills experience in that institution. Bill’s time was mostly spent in a crib cage, which had 4 sides and a top on it. Bill wore a helmet because he was banging his head on the bars, which was Bill’s way of trying to tell whoever would listen that he didn’t want to be in there.”
Joyce: “When he was taken in by the family after the institution they just loved him to death, and he lived with them for 12 years (until he was 19). The father providing most of the care fell ill, as well the 3 (other) boys of the family where moving out of the home – so it was a time for transition (for Bill).”
Joyce, who was Bills educational assistant (EA) at school since the age of 13, heard that Bill was looking for a new home. Bill and Joyce gave living together a couple of trial runs and it went well. Bill then moved in with Joyce. Since then they have blazed a trail with their advocacy work, and growing and learning together.
(Left to right: Arn Row, Bill Hiltz, Joyce Balaz)
Start with the Assumption of Capability
When you see Bill you wouldn’t expect him to have done the things that he has done in his life. When Bill was in the institution as a toddler he was caged because he was misunderstood. Assumptions where made about his capability, or should I say incapability. Bill was shown love and respect by the family that adopted him, and since by Joyce, Arn, and many others. Bill’s story highlights the dangers of starting with the assumption that a person isn’t capable.
By assuming a person is NOT capable we keep them caged and deny the opportunity to live their best life. When we start with the assumption that a person IS capable, we give that person the opportunity to grow and live their best possible life.
What is the worst thing that can happen if we start with the assumption that someone is capable? They fail, and hopefully learn so they can be more successful in their next attempt. (Yes, it is important that we consider holding people capable in an environment that is safe for them so that if they do fail they have the opportunity to get back up and try again.)
Always start by holding people capable, disability or not!
Bill taught me this invaluable lesson. When I first met Bill I assumed that Bill wasn’t capable of having a conversation with me – and boy did he prove me wrong! Thank you, Bill.
We discuss holding people capable in more depth on the podcast.
Our Fear of ‘Different’
It took me well over 5 days of being around Bill before I actually engaged in a conversation with him. What took me so long to talk with Bill?
It was my own fear.
I judged Bill because I had perceived Bill as being different than me. This self-acknowledgement hit me square between the eyes. My sister has a disability, and I have several friends that have disabilities, and this fear was still present inside of me. What does this fear look like for others that have not had contact with people with visible disabilities like I have?
Joyce had a similar experience when first meeting Bill as an educational assistant (EA). Joyce shares, “…. I told the teacher that I didn’t want to work with Bill because I didn’t know how to work with him. The first time that I told Bill this he was mad, and didn’t talk to me for two weeks. Now that he has heard this story a number of times it has given him an opportunity to think about how other people view him.”
How is your fear holding you back from interacting with a person that you perceive as different? It could be a person with a disability, a person from a different ethnic background, or a different religion.
How Do We Best Communicate with Bill (and others that have a developmental disability):
In this episode, we discuss how it can be difficult to enter into a conversation with a person when there isn’t a response or acknowledgement back from the other person. This doesn’t mean that that person isn’t interested in engaging with you. Here are 3 tips we provide on the podcast to communicate with people that have a developmental disability:
1) Be patient
2) Be sincere
3) Ask how to best communicate with the person
Bill has shared, we need to learn how to slow down. A fast pace verbal world isn’t the world that Bill lives in. Bill gives others the gift by providing them to slow down and operate at his frequency.
Bill Hiltz’s Advocacy Work
Bill’s seizures have such a severe impact on his energy that he has forgone his recreational activities, such as horseback riding, and uses his energy to solely focus on his advocacy work.
Bill envisions a world where we are seen as we who we are, not for what is different. Bill shares, “People have been excluded for so long, which means people see the difference first. When people we are truly included others get to experience who we really are.”
Bill has started the “Walk a Mile in My Shoe” project (seen in the blog cover photo) where he invites people to acquire a disability, (for example loss of sight, hearing, or physical ability), and walk beside him to experience what it is like to live with a disability for a short amount of time. Bill’s theory is that the experience will lead to understanding, which will lead to change.
You can support Bill by visiting his website, or participating in/ sponsoring one of his events. The proceeds go to the organization Reach for the Rainbow, which provided Bill with camp experiences as he grew up.
Bill shares his wisdom with us in his powerful poem, titled 'Understanding People'
UNDERSTANDING PEOPLE
A SET OF STANDARDS BY WHICH TO JUDGE
TO THEIR FRIENDS, THEY GIVE A NUDGE
WHEN THEY SEE ME COME THEIR WAY,
THEY STOP AND WALK THE OTHER WAY
OR EVEN WORSE, THEY STOP AND STARE
AS IF I'M STUPID AND UNAWARE.
IF ONLY THEY COULD KNOW, THAT I CARE;
HOW PEOPLE VIEW ME--IT'S JUST NOT FAIR!
I FEEL THE VERY SAME AS OTHERS DO,
THEY SHOULD TRY AND WALK IN MY SHOE.
LIFE'S NOT EASY, WHEN THE BODY THAT YOU OWN
WAS GIVEN TO YOU BROKEN-DOWN.
THEY MAY BE MEAN; THEY MAY BE CRUEL; THEY MAY BE BAD;
BUT MOST OF ALL...THEY JUST DON'T UNDERSTAND.
WITH SOME TIME AND SPECIAL GUIDANCE;
WE CAN HAVE A GREAT ALLIANCE.
FOR AN HOUR, OR FOR A DAY;
WE ALL NEED FRIENDS ALONG THE WAY.
SO WHEN YOU SEE ME COME ALONG
TRY NOT TO FOCUS ON WHAT IS WRONG;
I AM A PERSON JUST LIKE YOU,
WHO NEEDS AND DESERVES A GOOD FRIEND TOO.
JUST WALK BESIDE ME STRAIGHT AND TALL
AND BE THE FRIEND THAT I CAN CALL
WHEN I AM LONELY AND AFRAID.
JUST REMEMBER WHAT I'VE SAID:
ALL YOU NEED IS TO UNDERSTAND;
DO NOT JUDGE JUST TAKE MY HAND.
- Bill Hiltz
1998
I thank Bill, Joyce, and Arn for coming on the podcast to share their story and insights!
Love & Respect,
Eric
Resources:
Walk a Mile in my Shoe: Video: Click Here
Walk a Mile in my Shoe Website: www.inmyshoe.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Sep 12, 2017
Tuesday Sep 12, 2017
Parenting author, Ann Douglas, discusses parenting a child with a mental illness /disability, and practicing self-care so we are available as care-givers.
This week on the podcast/ blog I welcome Ann Douglas, author of numerous books on parenting with over half a million copies sold. Ann and I discuss her newest book titled “Parenting Through the Storm”, which is a guide to parenting a child who is struggling with Mental health, neuro-developmental, or behavioural challenges. We also focus in on self-care for parents (and supporters), and discuss why it is important, tips to practice self-care, and how to create the space for yourself.
Parenting Through the Storm
In the writing of this book, Ann interviewed 50 other parents that have been through it, and she found many common threads through all of their experiences. She took her research findings as well as her own personal experiences and wrote this book to provide practical advice for parents.
On the podcast Ann shares, “I wrote this book because all 4 of my kids had some sort of challenge, and at the time I thought ‘ I must be doing it wrong.’ I desperately needed to know that things could get better – and they have! Parents are resilient, children are resilient, and families are resilient. It is possible to go through all these storms together and to come out stronger and more connected on the other side”
You can learn more about the book at www.anndouglas.net.
Is There a Right Way to Parenting?
On the podcast Ann shares, “There is a right way for your family, and you figure that out over time. Each of my 4 kids needed a different approach to parenting. It isn’t cookie cutter, because everyone is different. There were times that 1 of our kids needed ¾ of the parenting energy, which left only tiny little slices for the rest of the kids…. I felt guilty about that… but there are times when our attention had to shift around.”
What is Self-Care? and Why is it Important?
On the podcast Ann shares, “Sometimes people think about self-care as self-indulgence, for example, sitting on the couch eating bonbons. But, that isn’t how it usually plays out. Mainly it is about taking good care of yourself so that you have something left to give to the family member who needs you. When you are parenting a child, who is struggling you can’t afford to get completely burnt out and depleted. Without you your child will be lost.”
“Even though it can feel selfish I would argue it isn’t selfish, it is self-preservation.”
Practicing Self-Care
We are all unique in our own ways, and the best way for us to practice self-care is unique to us. We all have a self-care tool box filled with tools to refill our energy tanks, sometimes we just aren’t opening the toolbox frequently enough.
Ann provides 3 tips to practicing great self-care.
1) Physical Activity – Move your body in a way that is right for you. For Ann, this means taking 2 walks per day. (For me, this means breaking a sweat every morning by running or biking. Physical activity supports our physical health, and also enhances our brain function.)
2) Social Support – Ann shares, “It takes a village to raise a child, and I would argue it takes a village to support the parents that are supporting that child. Accept help when it is offered, and ask for help when you need it.” When you have help use the space to practice good self-care to fill your energy tank.
3) A Creative Outlet – Ann Shares, “Creative outlets take the focus away from worries, and brings our focus into that activity. There is research that shows that when our brain is actively engaged in a different activity (a hobby, etc.) it leaves us feeling more refreshed vs. vegging out on the couch.”
Tips For Creating the Space for Self-Care:
> Let others help you, and take a slice of that time to do something kind for yourself.
> Ask for help. It is a great opportunity that you are giving someone else when you ask them to help – lose the guilt about that.
> If we need to find the time then look at where you are wasting the time. For how many hours are you watching TV, or on your phone?
> Don’t be seduced into the that zoning out, find a creative activity.
> Be intentional about creating the space in your day for self-care. (I block off the first 2 hours of my day to break a sweat, read, meditate)
Ann shares her personal story of falling into bad habits that resulted in poor sleep, anxiety, and gaining 100 lbs, then breaking the cycle, building positive self-care habits, and loosing those 100 lbs.
I thank Ann for coming on the podcast/ blog to share the what she has learned on her parenting journey, and for sharing her wealth of knowledge on self-care to help us live happy and healthy lives.
If you enjoyed this blog/ podcast Subscribe to our mailing list and get a new episode every week!
Love & Respect,
Eric
Resources:
Learn more about Ann's Books: Click Here
Contact Ann Douglas on Twitter: @anndouglas
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Wednesday Aug 09, 2017
Wednesday Aug 09, 2017
This is the story of Michael Mainland’s incredible ordinary life. Michael is 38 years old, works at Boston Pizza, has his own house, lives with a roommate and volunteers regularly. What may come as a surprise to some is that Michael has a developmental disability that caused him to become non-verbal and reduced fine motor skills as he grew older.
Michael’s Story in Starting in High School:
I had the opportunity to interview Michael’s mother, Alice Mainland, to learn Michael’s story and to learn how Michael has created his ordinary life.
In the 2 months before Michael graduated from high school, Michael and his family realized they had a problem; there would be nothing for Michael once school ended. One of his parents would have to stay home to support Michael, and the family would drop down to a single income. Alice started making phone calls to various support agencies, local government, and basically anyone with a phone number that might be able to help. The people she called were willing to help! With the support of a few agencies the family was able to piece together support for Michael and this allowed the family to stay a two-income family.
Alice shares, “You don’t know what resources are available to you until you ask. “
At 29, Michael had the opportunity to move out of home because of a conversation 4 -5 years earlier when Alice was searching for support for Michael.
Michael’s Life Today:
Michael’s family purchased a duplex where Michael lives with a roommate in one unit, and a supportive neighbor lives in the second unit who is available for overnight support. The family focused on creating a great home for the supportive neighbor, and this strategy has been effective at attracting and retaining long-term tenants.
The first few weeks Michael lived on his own was a worrisome time for Alice and her husband, however their worries didn’t become a reality.
During the week Michael lives at his own house, works at Boston Pizza, and volunteers at the local foodbank. On weekends, Michael gets to spend quality time with his parents on their rural property. Alice and Michael often run errands on the weekend in town and Michael has 2-3 times the number of people saying hello to him compared to his mother. This is a great sign that Michael is building relationships in his community.
What’s next for the family?
Michael’s family is thinking about things like, who is going to take care of the house when Alice and her husband aren’t there? Who will help Michael make decisions? To ensure continuity in Michael’s future his family is looking at forming a micro-board. The purpose of the micro-board will be to help manage the home, and to help Michael make future decisions.
Lessons we can learn from Michael and his Family on living an ordinary life:
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Ask for help. Michael’s family reached out to anyone with a phone that might be able to help them. The people on the other end of the phone had good intentions and wanted to help.
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Environments where he can learn from his peers. Regular school classrooms (shop and gym for Michael's), working at Boston Pizza, volunteering, the Special Olympics.
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Opportunities to show off his skills. Michael loves to show off what he is good at from work to his recreation of horseback riding.
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Proloquo2Go. Michael is non-verbal the Pro lo to go app on his iPod empowers Michael to express himself more fully with others.
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Let go, and let in. Over time Michael’s parents have had to let go, which has allowed Michael to become his own person. The family has also had to allow other people to enter and be a part of Michael’s life. (Without interviewing them first!). At some point, someone else is going to have to be there for Michael other than his parents.
I thank Alice for sharing her family’s story. There are great insights and lessons that we can apply to our own situations.
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Proloquo2Go - symbol-supported communication app - Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Monday May 08, 2017
Monday May 08, 2017
Two sisters, Jade and Mallory Ryan, who are occupational therapists and experienced dancers are partnering with dance studios to create a dance class that is inclusive of kids with all abilities.
Website: www.danceabilitymovement.com
Location: Milton, Toronto, Ontario, Canada
Monday Apr 17, 2017
Monday Apr 17, 2017
Website: www.bobrumball.org
Contact: Click here
Phone: 905-878-4932
Location: Milton, Toronto, Parry Sound, Barrie - Ontario, Canada
Monday Apr 10, 2017
Monday Apr 10, 2017
- Discover social capital
- Learn why social capital is important (for everyone)
- Learn the 4 stage framework to increase an individual's social capital
How to contact Al Condeluci:
Website: http://www.alcondeluci.com/
Contact: http://www.alcondeluci.com/contact/
Location: Pittsburg PA, USA
Website: http://liveworkplay.ca/
Website: https://keenanwellar.wordpress.com/
Contact: http://liveworkplay.ca/contact-us/
Phone: 613-702-0332
Location: Ottawa, Ontario, Canada
Resources:
Research Study - Canadian Journal of Disability Studies: 'Somewhere to live, something to do, someone to love: Examining levels and sources of social capital among people with disabilities' Click Here
Monday Apr 03, 2017
Monday Apr 03, 2017
- Discover family networks
- Learn why families are joining family networks and the benefits they are getting
- Learn how a mentor/ mentee relationship work
How to contact the Waterloo Region Family Network team:
Website: https://wrfn.info/
E-mail: Katie (family resource coach): katie.galashan@wrfn.info, Sue Simpson: sue.simpson@wrfn.info
Location: Kitchener/ Waterloo, Ontario, Canada
Resources:
Evening of Elegance Event: https://wrfn.info/an-evening-of-elegance/
Family Alliance Ontario: https://family-alliance.com/index.html
Monday Mar 27, 2017
Monday Mar 27, 2017
#004 - Employees with a Disability and Employers Collaborate for Workplace Success, with Laura McKeen, of Cohen Highley LLP Lawyers
How to contact Laura McKeen and Cohen Highley LLP Lawyers:
Website: www.cohenhighley.com
E-mail:mckeen@cohenhighley.com
Learn more about Laura: http://cohenhighley.com/lawyers/laura-m-mckeen/
Location: London, Ontario, Canada
Resources:
8 Myths About Hiring Employees with Disabilities, by the Ontario Chamber of Commerce -http://www.occ.ca/emerging-stronger-agenda/8-myths-about-hiring-employees-with-disabilities/
Business Benefits of Accessible Workplaces, by the conference board of Canada - http://www.conferenceboard.ca/documents/6264_accessibleworkplaces_br_av.pdf
Partnership Council on Employment Opportunities for Persons with Disabilities Report, published by the Government of Ontario - http://www.conferenceboard.ca/documents/6264_accessibleworkplaces_br_av.pdf
Love & Respect,
Eric
Tuesday Mar 21, 2017
Tuesday Mar 21, 2017
003 - Independent Facilitation and Support Circles Enriching Lives, with Joanna Goode, Director of Facilitation Wellington Dufferin
What you will get in this episode:
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Discover Independent facilitation and support circles
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What is the investment? Cost? Benefit?
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Hear success stories with facilitation and support circles
- Learn how to start working with an independent facilitator
How to contact Joanna Goode and Facilitation Wellington Dufferin:
www.facilitationwd.com
Phone: 226-326-0916
E-mail: info@facilitationwd.com
https://www.facebook.com/FacilitationWellingtonDufferin
Resources:
Ontario Independent Facilitation Network: http://www.oifn.ca/
If you are outside of Ontario Google 'Independent Facilitation + your location' to find local facilitators.