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Empowering people with disabilities to live an incredible ordinary life.
Episodes
Friday Sep 29, 2023
Friday Sep 29, 2023
I know you want your loved one with a disability to be safe and well cared for in the future...
And... you might be thinking that a group home and/or day program is the answer.
But... I want to share something with you that I heard from a conversation with a government agency director that might just shake your entire belief system.
In a word: It's dangerous.
Curious? Concerned? You should be.
Listen to this short episode, where I uncover the dangers of group homes and day programs for your loved one and give you a better alternative.
With gratitude,
Eric
P.S. Transform worry into action: secure an amazing future for your loved one with a developmental disability:
Register for the Life Plan Workshop [FREE]
Saturday Sep 23, 2023
Saturday Sep 23, 2023
Ever catch yourself worrying that you’re loved one isn’t capable of independence?
Trust me, you’re not alone. My mom felt the same way about my sister Sarah.
Mom was so worried that Sarah couldn’t even get out of bed on her own. The truth was something else entirely.
… the lengths I had to go to prove it? Let’s just say it’s a story you don’t want to miss!
AND it could very well change how you approach your own caregiving journey.
Let me tell you the story… listen to this episode!
with gratitude,
Eric
P.S. Transform worry into action – Prepare your loved one for independence and a secure future:
Friday Sep 08, 2023
Friday Sep 08, 2023
You’re a loving mother committed to your loved one’s growth.
I know it’s challenging, but there’s a way to help your loved one’s independence flourish.
This short podcast reveals two stories, from family members like you, who transformed their loved one’s lives using daily routines, consistency, and even failure.
Growing your loved one’s independence is possible, and I’ve got the next steps for you in this podcast!
With gratitude,
Eric
Claim your free guide to help you grow your loved one's independence: Download here
Friday Sep 01, 2023
Friday Sep 01, 2023
Is your loved one's progress feeling slow?
I want to share a story with you, one that offers a path to independence that you've been looking for.
In this podcast, you'll learn from Lori's journey, a mother who started breaking down bigger tasks for her daughter into small, manageable steps. Lori's patience and pacing paved the way for her daughter's growing confidence and independence.
This story isn't just about Lori's daughter; it's a process you can use with your loved one.
Listen to learn how you can use small steps to help your loved one make more progress.
With gratitude,
Eric
Claim your free guide to help you grow your loved one's independence:
Download here: https://www.empoweringability.org/independence-tips/
Friday Aug 18, 2023
Friday Aug 18, 2023
Tired of the constant nagging to try and motivate your loved one with a developmental disability to do more at home?
Imagine a world where your loved one is interested in growing their independence without resistance.
The secret is in identifying the perfect opportunity. Let me guide you through it, drawing inspiration from Karen’s story.
In this podcast, I’m going to help you find that right opportunity to engage your loved one.
with gratitude,
Eric
Claim your free guide ‘Growing Independence in 7 Simple Steps.’
Friday Feb 24, 2023
Friday Feb 24, 2023
Are you feeling frustrated with the limited options available for your loved one with a developmental disability?
Do you feel like they're just going through the motions at their day program without really growing or experiencing life to the fullest?
If so, I'm here to tell you that there are better options out there.
The truth is, there are better ordinary options available for your loved one. We're here to help you explore and discover the possibilities that exist to help your loved one live an Awesome Ordinary Life, with more independence, real friendships, and even paid employment.
With gratitude,
Eric
P.S. Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop:
Wednesday Dec 18, 2019
Wednesday Dec 18, 2019
Lorna Sullivan, a global disability leader who is making significant changes inside the New Zealand social system. Lorna is the founder of the International Initiative for Disability Leadership (IIDL) and Director of Mana Whaikaha. I had the pleasure of learning from Lorna when she was part of the faculty in Michael Kendrick's Optimal Individualized Service Design Course.
In this podcast, we cover a wide range of topics, including:
- doing away with deficit-based assessments,
- enhancing a person's mana (explanation inside the podcast),
- the power of holding a positive vision,
- the rights of people with disabilities,
- tools for social inclusion,
- and much more!
About Lorna Sullivan:
Lorna became involved in being an advocate for people with disabilities by accident. She began her study in the field of Psychology, where she was first exposed to people with disabilities who she didn't know existed because they were hidden from the rest of society.
Lorna realized the damage that is done when a group of people, through no fault of their own, are marginalized from the rest of society and have no mechanism to find their way back.
Lorna shares, "If we continue to view disabled people as human tragedy and the best we can do for these people is to care for them; we will continue to deny them every aspect of life that we hold to be valuable."
Lorna helps us understand people with disabilities are the same as every other person, the same human needs, aspirations, and desires. She is on a mission to include people in all areas of society.
Lorna on Inclusion
Paraphrasing from the podcast, Lorna shares:
There is a fear of rejection, and in many cases, actual rejection is true.
My experience has been society wants to engage with people that have disabilities, but they don't know how to. We need to give them [people] the tools to do that [engage].
The best tool that we have to create more inclusion in society is to keep people close. If a person with disabilities is with other valued people in the Community, it makes it easier for other valued people to communicate with a person with disabilities. It normalizes the person.
Tweetable Quotes from Lorna:
"Never resort to the special, unless you have exhausted the ordinary. If we start in the special, we will always end in the special."
"The only thing that will change the trajectory of the lives of people with disabilities is where you have strong families, with strong vision - you have competent disabled people. Where you don't irrespective of the capacity of that person, you have dependency."
"Holding a very strong vision for a positive, meaningful, and full life isn't a trivial thing. If you don't hold this vision through the hard times, you will get blown anyway the wind is blowing."
This podcast with Lorna Sullivan is jam-packed with wisdom and is a must listen!
Also, if you like ideas discussed in this podcast, you are going to love the upcoming FREE Masterclass Workshop Series that guides families to build a strong vision for a positive, meaningful and full life that Lorna was talking about! Click Here to Sign up for free.
Love & Respect,
Eric
Resources:
Mana Whaikaha website: https://manawhaikaha.co.nz/
The International Initiative for Disability Leadership (IIDL) website: http://www.iimhl.com/iidl-homepage.html
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!
Tuesday Dec 11, 2018
Tuesday Dec 11, 2018
Learn about the Open Future Learning training resource for supporters of people that have an IDD, & how Ben Drew is fighting the oppression of people with IDDs.
In this podcast/ blog I had a pleasure of speaking with Ben Drew, Founder of Open Future Learning. Ben has over 20 years of experience working with people with an intellectual or developmental disability starting as learning disability nurse, then going on to create an individualized housing and support service, and he is now the Founder of Open Future Learning. Ben is also an incredible storyteller and even though this podcast is lengthy, it is a pleasure to listen to.
Due to the length of the podcast, the blog is broken down into Part 1, and Part 2. In Part 1 of the blog, you will learn about the Open Future Learning training resource for supporters of people with intellectual or developmental disabilities (IDDs), and Ben's life journey to fight oppression and create ordinary incredible lives for people with intellectual or developmental disabilities. In Part 2 of the blog, you will learn about 3 foundational support principals for exceptional support. As always, all of these insights can be heard by clicking play on the podcast player below.
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.
What is Open Future Learning?
Open Future Learning is an Online learning resource 100% dedicated to the field of intellectual or developmental disabilities (IDDs). The platform is developed for support staff, but anyone that touches the lives of people with IDD can benefit from the resource. The platform has a wide range of learning modules (for example: abuse prevention to social valued roles) which are delivered as interactive multimedia books. Open Future Learning is known for their short films and they have an on-demand video library with just over 700 short films featuring the leading global thinkers on IDD. They have also created a new product called Side-By-Side learning.
Ben explains, “ We have the saying from self-advocates, ‘Nothing about us, without us’, but we don’t live up to this. Training is one of those things. So we developed ‘side-by’side’ learning. The person that receives the support and provides the support do the learning together. They are short 30-minute interactive learning modules."
Ben continues, "Much of the content is created in collaboration with many of the leading minds in the developmental disability community. It is a really financially efficient way to get people to access these leading minds, compared to only the select few that were able to go to a conference."
The platform is designed for support organizations and priced accordingly, however, if you are an individual learner or a family and you want access to this resource you can email Ben and he will help you to access this resource. Email hello@openfuturelearning.org
Ben Drew’s Mission To Fight Oppression and Create Ordinary Lives for People with IDDs:
Paraphrasing from the podcast, Ben shares his story:
“I grew up in the UK in a small town called Devon. On the outskirts of the town, there was a small community for people with IDDs. It was kind of like Camphill without the farm. My best friend from school lived in that community, his parents managed the community. He lived in this cluster of houses where people with IDDs lived. It was great because we played football (soccer) on demand, it was mostly guys, and I got to know all of these people in the best way. When these guys came into the town the way that other people interacted with them was different. They teased them, they spoke behind their backs about them. This always sat with me and it was the starting point to wanting to work with people with disabilities. Went I was 18 years old I went to a summer camp for people with IDDs in the US, and really enjoyed it. Then came back to the UK and got a job with a guy named Gary Kent. He lived in a large residential home with 20 people with IDDs. It was a hospital that had been converted for people with IDDs to live after the institutions closed. Gary lived there as well but decided he wanted his own home. He left and purchased his own home in a nearby village. When Gary came back to the residential home he said he had to close down the residential home. He had seen the other side of life. He was learning how to cook, he was in his own community, he had control over his life and his environment - and he wanted everyone else to have that.
There was a guy that lived there [in the residential home] that was physically abusive, and there was a guy that was a runner. When the runner chose where he wanted to live, he never ran away again. The guy who was a hitter moved into a home of his own and he stopped hitting people. You can be getting really good support and if the environment isn’t right and the location isn’t right - you can only so so much.”
Insight: This was a huge lesson for Ben when he saw the change in people when they got control of their lives. These oppressive environments occur in residential homes, but they can also happen within our family homes. Speaking from personal experience, my parents home became an oppressive environment for my sister Sarah (who has an IDD) due to a lack of choice, social isolation, and lack of transportation. Most of Sarah’s decisions were made for her and most things were done for her. Of course, these things were done with the best of intentions, but this caused more stress and anxiety on everyone in the household, everyone entering the household, and suppressed opportunities for Sarah to grow. Sarah has moved out of her parents home and into a home shared with me where she now has choice and control of her life.
Ben continues with a leadership insight:
“Vulnerability of leaders is important. Gary was always incredibly transparent. He would always share his mistakes and things he had messed up. The residential home was just another thing. In order to empower everyone else underneath him, he had to be that way. The people underneath him could also make mistakes, they could also mess-up. I see cultures in organizations coming down on people. If you make a mistake it is a warning, if you make 3 mistakes you aren’t allowed to do things anymore. That culture just doesn’t work.”
Ben then when on to set up service to help 100 people with IDDs over 6 years to buy or rent their own home, manage their own supports with their own budgets, in Bristol UK, using the formula Gary gave him. Ben then moved to New York, and that is where he started Open Future Learning.
Part 2 of this blog is coming on December 18th, with insights on 3 fundamental support principals that are foundational to great support. If you want to learn about these core support principals now, you can do so by listening to the podcast.
Ben is also the creator of memes that help to nudge people in the direction of being more accepting, more inclusive, and to develop the understanding of what it is like to live with an intellectual or developmental disability. Here are a couple of my favourites:
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.
You can also support this work by subscribing. This podcast and blog is supported completely by listeners and readers like you. Thank you to those that have supported by subscribing!
Love & Respect,
Eric Goll
Resources:
http://www.openfuturelearning.org/
https://www.youtube.com/user/OpenFutureLearning
Email: ben@openfuturelearning.org
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The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!