Empowering Ability Podcast

#074: Paid Supporters are NOT your loved one’s friend

Do you pay people to act like your friend?

I didn't think so.

So why is it acceptable for paid supporters to act like our loved one's friend when they are NOT in a friendship?!

The behaviour of a paid supporter acting like a friend causes harm to your loved one.

In this video, I share why it is harmful, what you can do to stop the harm, and how you can redirect that paid supporter to be a bridge to real friendships.

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:

https://www.empoweringability.org/workshop/

#073: How Chloe left the high school transitions program and gained paid employment

To help you see more ordinary life possibilities for your loved ones with developmental disabilities, I will share stories of families working with their loved ones to take steps forward to create an Awesome Ordinary Life.

Chloe was in a high school transition program for students with disabilities in her final years of high school.

She became increasingly frustrated by the lack of opportunity the transition program provided and felt like it was holding her back.

Chloe, supported by her mom, Laura, decided to leave the support of the transition program and pursue paid employment.

Today, Chloe is gainfully employed, building meaningful relationships with peers at work, and enjoying her interests in ordinary places in the community.

 

Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop that Laura took to start building an Awesome Ordinary Life with Chloe!

https://www.empoweringability.org/workshop/

#072: How to create a life plan

I’ve been talking about life planning and creating a life plan these last few weeks… And I’ve received many questions from families on this topic.

 

The most common question is… “How do I create a life plan with my loved one?”

 

To help you get started, I created this episode for you.

 

very best,

Eric

 

 

P.S. The upcoming 'Life Plan Workshop' will help you start building an "Awesome Ordinary" life plan with your loved one.

Get your free seat by tapping the link below if you haven't registered yet!

Register for your (free) 'Life Plan Workshop' seat

#071: Which of these 2 paths is your loved one on?

There are two (2) very different paths for your loved one who has a developmental disability...

Which path is your loved one on?!...

The "Special Needs" path -OR- the "Awesome Ordinary" path.

Each path provides a very different life experience.

Listen to this short podcast episode to help you discover what path your loved one is currently on and how it impacts their life.

very best,
Eric



P.S. The upcoming 'Life Plan Workshop' will help you take steps down the "Awesome Ordinary" path.

If you haven't registered yet, get your free seat below!

Register for your (free) 'Life Plan Workshop' seat

#070: What is a Life Plan?

If you don't have a plan, you're planning to fail. - Benjamin Franklin

We need to plan for who will care for our loved one with a developmental disability for when the time comes that we can't. I know this is your #1 fear, and it can be hard to talk about...

But, if you don't have a plan in place, your loved one is at greater risk of falling into the 'system' and experiencing harm. This is the truth.

You want your loved one to have the best life possible, so I've got a short video and article to teach you more about life planning and how you can get started.

 

very best,

Eric

 

 

P.S. If you haven't registered yet, I invite you to join us in the Life Plan Workshop on February 22nd to get started!

 

Register for the Life Plan Workshop: https://www.empoweringability.org/workshop/

#069: Stop telling, start listening.

Do you find yourself continually prompting your loved one to take care of their responsibilities around the house?!

It gets exhausting.

I’ve got a different approach for you to try this week…

To start, take a moment to mindfully slow down and breathe and listen to the different ways that your family member is communicating…

 

Check out this episode to learn more!

 

very best,

Eric

 

#068: safety vs. independence

How do you keep your loved one with a developmental disability safe while enabling them to develop their independence?

There is tension between safety and independence that we experience as families.

If you want to learn how you can stop overprotecting your loved one and limiting their life experiences I share more in this podcast.

Very best,

Eric

 

P.S. If you want to get your FREE copy of the Ultimate Guide to Independence go here: https://www.empoweringability.org/independence

#067: Achieving your goals in 2022

Happy 2022!

This year, I want to help you to live into the "Awesome Ordinary" life goals that you've got in your mind for your loved one and family.

Over the holidays, I read Will Smith's book titled "Will." So it was entertaining, yet profoundly deep and inspirational; I highly recommend it. In the book, Will Smith shares a great story about a Buddhist parable that teaches us that what got us to where we are today isn't going to get us to where we want to go.

I've got a short video/ article that shares the parable and how we can use this wisdom to help you achieve your goals in 2022.

 

very best,

Eric

 

P.S. If you want to get your FREE copy of the Ultimate Guide to Independence go here: https://www.empoweringability.org/independence

#066: Jamie just moved into his home

Charlotte wanted to support her son, Jamie, to move out into his own home but wasn’t sure how. I had the pleasure of working with Charlotte and Jamie to build an “Awesome Ordinary” life vision in my coaching programs. And recently, Jamie moved into his own home! I had the opportunity to catch up with Charlotte to learn about Jamie’s progress and how they did it!

 

CLICK HERE to join the waitlist for the Life Plan Coaching Program.

I’d love it if you left a kind comment below!

#065: My #1 strategy to motivate your loved one

Are you tired of prompting or telling your loved one to do things, maybe do things around the house?
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This is something that many families that I work with keep bumping into, and it becomes exhausting for you and frustrating for your loved one.
​
In this video/article, I give you my #1 strategy to motivate your loved one! This means less prompting from you, and more choice and control for your loved one.

 

very best,

Eric Goll

P.S. If you want to get your FREE copy of the Ultimate Guide to Independence go here: https://www.empoweringability.org/independence

 

#064: Why focus on independence?

What do we mean by wanting our loved one with a developmental disability to have more independence?

And, why is helping your loved one grow their independence so important?

In this week's podcast, I tackle these questions and share the story of Sarah's journey to independence. Click the link below for the video and written transcription.

 

https://www.empoweringability.org/why-independence/

 

#63: We all fall down

Sometimes we fail, we fall down... and we get back up, dust ourselves off, and try again. Falling down is a significant way to learn and find meaning in our lives. So why don't you let your loved one with a developmental disability fall down? FEAR! Your loved one might have vulnerabilities, and you do your best to protect them from harm's way. BUT, the protection you provide might be leading to more harm than the natural consequences that you're saving your loved one from experiencing. In this video, you'll learn the value of allowing your loved one with a disability to fall down and experience the natural consequences.

#062: Joe Clayton’s Story Institutionalization and Building His Life Afterward

I'm honored to bring you this conversation I recorded with Joe Clayton. Joe is a survivor of Rideau Regional Center; an institution closed in Smith Falls, Ontario.

"We as the people, disabilities, we cry just like everybody else. We laugh like everybody else. We are human beings, just like everybody else. And like I said before, we just want the world to know we are not monsters who got out of institutions. We are human beings, and we need to be respected and to be loved. And we don't need to be treated like babies. We need to be treated like a human being and we... Yeah, that's it." - Joe Clayton

While being institutionalized as a child, Joe experienced several traumas and injustices and traumatic experiences which he shares with us in this podcast episode. Joe also shares his life after being institutionalized, and through his faith, he found forgiveness and the courage to live life. Joe is an indigenous man and a creative who expresses his creativity through photography and art. Joe now lives with his partner, Christina. Before you listen to this conversation with Joe, I want to warn you that Joe describes many of the horrific acts performed and forced on him. The description of these acts might be triggering for some listeners. Note: There is a full transcription of this podcast at the bottom of this post.

This conversation with Joe was recorded on April 16, 2020, and the time of this publication is September 1, 2020. A lot has changed in our world since I recorded this conversation with Joe Clayton. COVID-19 and its global impacts have been a significant stressor on our families, including mine. As well, there's been an awakening to the social justice issues in our world for black people, indigenous people, and people of color. So at the beginning of this episode, I share my stance and Empowering Ability's stance on antiracism, and what I'm doing to be an active antiracist. CLICK HERE for to read Empowering Ability's Antiracism commitment on our homepage.

Check out Joe Claytons Art and Photography on Facebook

Contact Joe Clayton: williamjc53@gmail.com

Below are some examples of Joe Clayton's Artwork and Photography

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Podcast transcription below was completed by Otter.ai. Please note that this transcription was completed word by word in the conversation and hasn't been corrected for written grammar.

Eric Goll 00:22

Hi, I'm Eric Goll and today I'm honored to bring you a conversation I recorded with Joe Clayton and Joe is a survivor of Rideau Regional Center, an institution that closed located in Smith Falls, Ontario. And this conversation with Joe was recorded on April 16 2020. Today being September 1 2020, at the time of this publication, and a lot has changed in our world since I publish or since I recorded rather this conversation with Joe Clayton. COVID-19 and its global impacts have been a major stressor stressor on our families, including mine. as well. There's been an awakening to the social justice issues in our world for black people, indigenous people and people of color. So before I share this conversation with Joe Clayton with you, I'm going to share my stance and Empowering Ability's stance on antiracism, and what I'm doing to be antiracis. We are committed to the work of anti racism. We are learning about anti-black racism, anti-indigenous racism, and how white privilege and superiority impact the people and communities we serve and that I serve. I am aware of the intersection of disability, LGBT LGBTQ plus and how that increases the societal devaluation of bipoc. We must continue to have uncomfortable conversations to dismantle systematic racial barriers that have blocked social and economic progress for black and indigenous peoples for generations as well as people with disabilities. We know that the first step towards change is to speak up. And we want to be very clear, Black Lives Matter to Empowering Ability, and we commit to no longer being silent or neutral as we move towards tangible action and change. So for me as the founder of Empowering Ability, I've completed a six week antiracism training course and I commit to ongoing learning on anti racism. As a sis gender white man, I'm doing the work to recognize my biases, you know, such as, I just want to share a few of these realizations that I've had with you around You know, my privilege and as a white cisgendered man. I'm not worried or I don't have the fear of being shot or killed when being pulled over in my car, by the police, or even, you know, being harassed for that matter. I can see my race and gender widely represented in roles and in spaces that I aspire to be in or I aspire to. I'm confident that I can reach out to organizations and to leaders and have them open my emails, or even share my content. I can be confident that families will be open to working with me because I feel familiar or I feel safe to them. I can speak to you without my race being put on trial. I can step away from the conversations of race if I wish to. So these are some examples that I've realized of my white privilege. And now, you know, I'm very aware of these things. Whereas six months ago, I wasn't. So, you know, part of this learning was through completed through a six week anti racism course, and I'm continuing my learning and my journey to be an anti racist. And I'm listening, and I'm listening to diverse voices. And I encourage all of us to be doing this work of anti racism. So thank you for listening to me on this important issue. And today I'm bringing you this conversation with Joe Clayton. Joe is a survivor of the region rideau regional center an institution in Smith Falls, Ontario. That has closed and Joe experienced several traumas and injustices at a very young age, while being institutionalized, and Joe shares with us his experiences, and he also shares, you know his life after being institutionalized, and through his faith, faith, how he found forgiveness, and the courage to live life. Joe is an indigenous man, he is a creative. And he expresses that through photography and art, and he lives with his partner, Christina. So, before we roll this conversation with Joe, I just want to warn you that Joe describes many of the horrific acts performed and forced on him. And the description of these acts might be triggering for some listeners. So here is my conversation with Joe Clayton. Joe, welcome to the Empowering Ability podcast. So happy to have you on today.

Joe Clayton 06:04 Oh, thank you.

Eric Goll 06:05

Yeah, right on. Well, it's a pleasure to have you and Joe Clayton as a self advocate and a survivor of an institution, the Rideau regional center. I am honored to have you come on the podcast today and share your story and to share your experience with us. So I'm going to hand it over to you here, Joe. And, and we would be honored to hear your story.

Joe Clayton 06:39
I want to say thank you to everybody who's listening to my story. And anyways, here we go. I was born in Pembroke, Ontario on February 9. I was eight pounds nine ounces. I was with my mom for five years. My mom was sick and she could not care for me. So my mum's friend looked up to me after me until she died. On August 18 1958, at the age of five I went to the Childrens Aid Society. I remember that day as if it were yesterday. My mom say goodbye to me. And I got into the car and stood up on the backseat of the car watching out the back window. As mom got smaller and smaller, and then she was gone in my life. My life was like a game I'm I was always made to move one place to another, someone from the journey so they would throw my clothes in the trunk of the car, and they would take me to a new place. Upon arrival at the new place, I was told you have to stay here. I had no say in the matter. I felt like people were rejecting me all the time, and that no one really cared for me. Nobody seemed to understand my needs or my problems. And they never asked me to talk about them. My foster mom decided it would be better if I was institutionalized before I came too close or too dependent on my foster family on May 16 1966, at the age of 12, the journeys I put me in to Rideau Regional Center at Smith falls. Let me tell you, being an institution was like living in hell. First of all, I was put in the mission ward where we were made, where we made us to take our clothes off and stand before them naked. The staff didn't proceed to measure us to determine what size of clothes we need until our clothes arrive. About a week later, we had nothing else to wear as a nightgown. Once our clothes arrived, we had to put our names on every item to make sure no one stole them from us. During this day of the mission ward this staffs would take us for walks. And we were made two hands so that nobody would run away. This made me feel like a dog. The staff also line up like a herd of sheep. After two weeks in the mission Ward, I was transferred to tree D Ward, resident with 25 male patients remember that I was only 12 years old at the time. I can't tell you how afraid I was looking up at these older men who look like giants to me. We had to stand in line for our meals and for our pills, which they call candies. If I move a inch while In this line, one of the patients would attacked me. Needless to say, I only moved once in the lineup, and never again. We also had to walk down the hallway in line to get your shirts with our towels wrapped around our waist. We have to shower in the same place with no privacy, which made me feel like I was in prison. I was terrified and scared seeing all these naked men around me. They hit me with wet roll up towels, and I end up cuts on my body. I was also gang raped in the shower and pass out from this attack. There were there was lots of fighting and stealing in 3d. I fear for my life and my belongings. And older men attacked me with scissors. I was cut but nobody cared how I was treated. I was made to feel ashamed very lonely and afraid for my life. The doors to 3d were always locked and the only time I was allowed other staff members to go walks washroom, showers, meals or school. Once when I did not follow the rule is I was put in a dark room. They call this the side room where doors were a locked. I was made to sit naked on a cold floor. And when I was sitting on the cold floor, there is no toilets, there was no bathroom. So you would just bathroom on the floor, and then you when you leave the side room, you come back and you clean it. men would look in the windows and laugh at me. Another time when I did not follow the rules. They put my head in a toilet bowl and maybe kneel in a corner for two to three hours. Once when I swear they made me eat a bar of soap. I was sick to my stomach. There was never any privacy at Rideau. I did not understand why I was being treated so badly. I sat in the corner crying of fear and sadness. Not all the staffs are bad people, we had some good staffs as well. Every night I was attacked and raped by some of the patients who said, If I told the staff they would kill me, this went on for six years, and I was once told I would. I was being taken for a brain test, where they hook wires up to my head and put a piece of wood under my tongue. I was then shock. And my entire jaw shook. Nobody ever explained to me why they did this after running away or Rideau center. Several times I've been found and returned. I met a nice man\ Liel Nichols, at Rideau Reginal, who informed me that if I did not run away for a solid year, they will let me out. On May the 16th 1971 age of 18, I showed someone from that group came and picked me up, and I was happy and finally able to leave Rideau Regional center. Living there was like hell for me. It is great to talk about my story, but moving ahead in the future was difficulty because of the institution was blocking me. Many people offered to support me, but they could not get through to me. The institution was holding me back until I met Christina in 2014. And she helped me to see the way. The day I met Christina, I decided not to let the past take me down, but to live and be free from the past. First, I learned to love myself and to forgive anyone who hurt me. Then I learn to move, move on, and a balanced life after. After that I decided to share my story. Being able to share my story and experience of others has given me the knowledge and never ever let this happen to anyone again. I believe that sharing, such hardships in life are a big part of the healing process. I hope sharing my story will change the way people see others with disability. And I incourage those who have been abused to speak up and start the amazing healing process. My goal is to educate people about what happened in the institution is to do my best to ensure that this type of punishment and abuse doesn't happen again to any human being. Sexual abuse is the worst thing that can happen to anyone. Of the many others who where abused at Rideau Regional Centre some are dead, and their secrets lies with them. I'm still alive and I'm proud to be speaking for them. You just can't take a shower and wash away the horrible memories. I'm glad I did not succesfully end in my life. Because then I would just be another victim of abuse in an institution who takes his story to the grave. I'm a survivor. I know that someday I will die but I will rest well, because I actually did something that help our community and our world by speaking up for what I believe. I'm very happy today to be successful in my new life running Art Gallery, enjoying the things around me going camping, fishing, bicycle, photographing wildlife. I even enjoy the winter times in Northern Ontario. Yes, winter. I love it. I love to go snowshoeing and skiing. Learning how to do art on the computer with my photos is something I never did before. When I start to believe in myself all the worthless was gone and new creative door open for me. When I go home after telling my story, I would relive it and I would become very grumpy. Yes, me, grumpy inside. But I but I now found a way to handle these feelings. Taking photos, recreating art, finding other ways to solve the problems that have brought me to a
healing process with which also his humanity. My faith in God in the universe has helped my journey. One thing I do remember when I was in the institution, this prayer helped me a lot a lot. This prayer is for all the people who died in the institution. And our prayers are for the natives who's in the people that did not make it to. And did not get out to tell their story. The prayer insane is when I was in the institution I was there and I only remember one prayer that my foster mom taught me was the Lord is my shepherd. So every time I would get abused, I would never this prayer The Lord is my shepherd. And that's all I knew, until later I now I can read the whole thing. The Lord is my shepherd I shall not want He makes me lie down in green pastures needs me to say the still waters. He restores my soul. He leaves me in the past of the righteousness for his namesake. Yay do I walk through the valley of shadow of death of fear no evil for dow are with me thy rod and thy staff. they comfort me. Thou prepares the table before me, in the presence of enemies, dow anoints my head with my cup runneth over. Surely goodness and mercy shall follow me all the days of my life. I will do well, I will do well in the house of the Lord forever. Thank you, everyone for listen to my story. And thank you again.

Eric Goll 18:25

Joe, thank you so much for sharing your story. And it was really a difficult story for me to listen to, and I'm sure for the others that are going to listen to this podcast. I'm sure their stomach turned more than once, just like mine. And, you know, I could feel the emotion for the tragedy that happened to you and the terrible experience that you live through as a child from 12 to 18. And no child should ever have to go through what you went through Joe, sexual abuse and physical abuse and emotional mental abuse. It's It's terrible. One thing that comes through to me Joe was just your resiliency and how you were able to have that experience that terrible experience that traumatic experiences at young age and still become the man that you you are today and enjoying life. And there's, you know, it's so much for us to learn from from your stories, and thank you for sharing. And I think, you know, if anybody listened to your story, and you hadn't mentioned that you were in an institution, for people with developmental disabilities, they would have assumed that you were in jail, and it's just completely completely wrong. Thank heavens at that institution Rideau regional center is is closed, it probably took way too long to to close it. But thanks, heavens, it's closed. And many other people I imagine had terrible traumatic experiences and abusive experiences, such of yourself as yourself, and thank you for helping to be the voice of those people that are no longer with us or don't have a voice. So, there's there's a couple questions that I have for you, Joe, if that's okay.

Joe Clayton 20:34 Yep.

Eric Goll 20:38

So, you mentioned that you were you ran away a couple of times. And, it sounds like the third, eventually you were you were set free. Can you tell us about those experiences of trying to escape and get out.

Joe Clayton 20:59
When I ran away from the institution. You know, like I said, there was an electric fence that time. I was in very big, it was just enough, you can just probably jump over. But the train was usually stops. And but they would say, the staffs would tell everybody say, if you ran away three weeks or four weeks, or you didn't get caught, you'd be free. And it was like a game or to me now I think about it was like a game. So but I didn't run away because of what they said I ran away is because I wanted to get away from what happened to me in there. The abuse and the things I was afraid for my life. I mean, I was raped no and treated like a criminal, well, I didn't. I was treated. I was put in an institution because I had a disability. And to me, I was a normal child. There was so many people who did not have a developed disability who were normal people. I never just throwing them in there and locking them up and making names for them saying they had this or that or whatever.

Eric Goll 22:30
Right to your point, there's nothing that you did, you were born you and because of how

other people viewed you, they stuck you in this terrible institution or jail.

Joe Clayton 22:45
Well, they just thought this would be like I read my story, institutionalize me, it would be better for me. But that's what they thought that these places were good people to go in. And when I ran away, that's what you do when you're treated bad. You run away, you know yourself and in The Great Escape, they ran away. In prisons, they ran away. But let's go, I think we'll cut that one. But maybe The Great Escape, we saw the movie, how they ran away because the way they were treated. And so I just, I didn't run away because it was a contest or a game. I heard about it. But I was scared for my life. And I and I wanted to just to get out of there. So by running away, I did draw attention to somebody and came to me and says, I tell you what, if you stopped running away for a year, you'll be out and his word came true, and I was out. So I'm glad I did run away. Because if I didn't, who knows where I would be right to this day, so thanks to that person. And I'm very happy that staff did that, you know, for me,

Eric Goll 24:16
Right. If that hadn't happened, Joe, how long do you think you would have been forced to

stay in that institution or, you know, jailed in that institution?

Joe Clayton 24:28
Some people have spent their whole life in the institution. So we don't know. I could have been worse, you know, I mean, they were doing a lot of treatments. They're redoing a lot of things. Experiments. There's a lot of things that I don't even talk about it. I just don't know how to talk about it because it's inside of me what I saw, but, you know, it's like it's unbelievable. The things that I seen and saw, the treatments that they give people I probably would be in there for a long time. You know, I because you have to understand in those days the Children's Aid Society that's what they were doing because there isn't, there is no room for a lot of people. So they figured institutions would be the best place. They would get care and love and support.

Eric Goll 25:31
But you got the exact opposite. Neglect, abuse and torture.

Joe Clayton 25:36
When the workers would bring people myself in the institution. They look around and go Wow, it looks very nice here. They were making the place look lovely. So people would think the place was nice, nice chandaleirs in the dinning rooms. Let's say all bowling alleys, swiming pools, auditorium, movies, you know, you know, like the theater, we had our own theater. We had, we had our own doctors in there. We had our own food in there. So what they did they made it look like it was a wonderful place to be. Disney Land. Yeah, Disney Land. So then people go in there and they they look around and they go, wow, this is a good place for this, you know, whoever. And so we got I think it was I think there's a word for it. I'm trying to remember the word to make people think in their mind that this is what do you call that word when the government; conspiracy. Because a lot of people walk in there and they bring their kids in and they thought it was a wonderful place. They would try to make things look good. But the inside no. And and if you if you saw my pictures, I

think I sent them to you when I was in the institution, those smile in my face, they get you to smile. They ask you to smile, to show people that you're happy. So yeah, so there was a lot of things going on there. But the thing is that happened a long time ago. And today is reality and today's a new life. And today, I want people to hear my story and to realize that we're not monsters that came out of the institution. We were human beings, and we we just want to be love and be respectful. And we are we are here now. And we just want to be happy. That's right.

Eric Goll 26:36

And you're a living example of that. So there was a lot of trauma you experienced, that you shared with us. And you said you've gone through a process of forgiveness and learning to love and learning to love yourself. I would think that forgiveness would be a really hard thing for those people that abused you and sexually abused you. What was what was helpful for you to work through that forgiveness?

Joe Clayton 28:58
That's a good question. My God, and my faith help me to learn to forgive. And, it wasn't easy it was very hard at times. I had to see a PhD doctor because I didn't love myselfand so I had to learn to say that word. So I had some people there helping, to say this word love, I love myself and to forgive all the people that hurt me. It took a lot of healing inside. But what what when I asked God and my faith and God to help me. And when I cried out to God and say, Please help me. I think that faith helped me and we all have different ways to express that to go different ways to be healed, but that healing for me it's amazing how I don't feel as angry anymore. I said this happen a long time ago. And and now here I am. But it was hard. Yes, it was really hard but with with the great supports that I had, and the great people that around me who cared about me, who helped me through this, and all the churches that I've been and the ministers who helped me in this and prayed with me. I think that my faith has helped me a lot. I had to find something and I found something, and I don't go and preach to anybody, I just live it every day and try to do my best.

Eric Goll 31:18

Yeah. Thanks for sharing that. Joe. What are your thoughts on what should happen with the institutions that are still operational Today. Many have been closed, but there are still institutions or institution like settings that people with developmental disabilities are being put in where it's not their choice. And I think even when I think about it, you know, group homes for example, where there might be four or six or eight people with a developmental disability being told that they all need to live in the same house and not really having a choice in that is still an institutional model. What are your thoughts on that? What do you think should happen with that in those institutions that do exist are institutionalized models such as group homes.

Joe Clayton 32:20
I think what I'm trying to say is, the reason why I'm reading my story institutions that are here today and group homes, they will hear my story, and they'll learn something from it. And they, and it will maybe help them to grow or maybe it'll help them to just do something that maybe we'll help them through my story. So yeah, and choose better staffs. Maybe or whatever. Yeah, it's just just Yeah.

Eric Goll 33:06
What Joe, what's your, your message for the world in terms of how people with developmental disabilities need to be treated.

Joe Clayton 33:17
We as the people, disabilities, we cry just like everybody else. We laugh like everybody else. We are human beings just like everybody else. And like I said before, we just want the world to know we are not monsters who got out of institutions. We are human beings, and we need to be respected and to be loved. And we don't need to be treated like babies. We need to be treated and treated like a human being and we... Yeah, that's that's it.

Eric Goll 34:04

Yeah, I couldn't agree with you more Joe and, you know, everybody's rights, people with developmental disabilities included, need to be recognized and honored and people disability to be treated just like everybody else. So I completely agree with what you're what you're saying and I and that goes for having choice in their life and being able to choose where they're going to live, what they're going to do, and, and you're a great example, Joe and from you sharing your story in terms of what's possible when somebody is given the right support and somebody's given, you know, tools and resources and you know, you've been able to create a wonderful life with yourself, even though you've gone through those very traumatic experiences. So moving forward just into today, Joe, can you share us with us a little bit more? You mentioned your art gallery if you could share a little bit more about your art gallery, your art and maybe where people could find you either online or getting get in touch with you to learn more.

Joe Clayton 35:22
Yes, we're good. It's quick because I'm going out. I'm going out on my phone. So we'll do it fast. Yeah, people can contact me. Log on Facebook, the Nature Natives's Art Gallery, and they can see Christina and my artwork. In the notes of the podcast episode all include your details. https://www.facebook.com/NatureNativesArtGallery And I have a business card. It's called Joe Clayton motive motive. Motor motivational and advocate speaker, a voice to the nation and I've been passing these cards out everywhere too so if people want to hire me to come out and speak I can and I don't know if I get my email out.

Eric Goll 36:26

all include it in the in the show notes in the blog for you. Joe's Email: williamjc53@gmail.com So I want to respect your your time here. And yes, I'm super grateful that you came on and shared your story with us and I, you know, I've learned a lot from you and I really admire your resiliency and your strength and your courage to share your very important story with us. So thank you so much for for sharing with me and and the rest of theworld.

Joe Clayton 37:00
Thank you. And I just want to thank you very much for inviting me to speak and give me the privilege to speak about my story and opportunity and and just say keep safe and everybody, and we'll be back to normal soon.

Eric Goll 37:25

Thanks, Joe. So a big thank you today to Joe Clayton for sharing his story and experiences with us. The acts forced upon Joe are horrible and no human should ever have to endure those experiences again. By Joe sharing his story hopefully it pushes us to continue to be better, to do better, to value all people. To value people with disabilities. To value indigenous people. To value black people. To value people of color. To value LGBTQ plus people. The social and injustices we're seeing today might look a little bit different than what we heard from Joe, but they still exist. They exist in our systems. They're programmed into our societies and they're programmed into us. We have to do better. I'm Eric Goll. Thank you for listening.

 

 

#061: The Power Of Positive Vision, with Lorna Sullivan

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

Taking Charge of Life, with Libby Ellis

Separated from her brother at childhood, Libby shares her journey of supporting her brother to create a great life. 

 

Enjoy this conversation with Libby Ellis, sibling, and founder of In Charge, a consulting organization in western Australia that is assisting people with disabilities to be the authors and champions of their own lives.

 

About Libby Ellis:

Libby works for a vivid vision of inclusion. She has walked many steps with her brother, Matthew, and for 20 years she has assisted others in taking front stage in their own lives. She supports people through the experiences, lessons, successes, and failures in self-direction over an extended period. Libby’s vision is to bring a personalized, heart understanding of what it takes to be in charge. Libby lives in Sydney, Australia with her husband, Sebastian.

 

Libby’s Story:

On the podcast, Libby shares her family experience. This blog captures a summary of her story; I recommend that you listen to the podcast to get the full version!

Libby lives in Sydney, Australia and has two brothers. A younger brother James and older brother Mathew (who has a disability). She is married to Sebastian (who is Canadian).

Matthew moved out of the family home when he was just nine years old. He moved into a medium-sized institution, where about 15 other people lived. Later on, the institution got broken up into smaller group homes. When her parents asked for help, that was the solution. For many families, this is still the proposed solution.

Libby started to realize these injustices that Mathew was faced with when she was in her mid to late teens. Matthew’s experience was a trigger for her rights based / social justice thinking. Libby was transformed through love and witnessing Matthews experiences in a disabled world. She saw his pain, vulnerability, powerlessness, and lack of control.

Libby’s family helped Matthew move out of the group home when he was 26. Her childhood experience was one of separation from her brother and trying to understand why it had to be that way.

 

How did the separation from your brother impact you?

Libby: “I started to ask why? It has led me on my path, and in my career to date. It has taken me to a lot of lessons and experiences that I have experienced over the last 25 years of my career.”

 

Can you share Matthew’s experience of separation?

Paraphrasing from the podcast, Libby shares: 
“Matthew doesn’t speak and hasn’t yet been able to share his experience. He can understand, but he is missing expressive language to share his thoughts and his feelings.

From my perspective, he experienced some not very nice things. He has some behaviors that developed as coping mechanisms. When I look at pictures of him from that time vs. images of him now, there is such a difference, and it isn’t a difference of age. I can see the impact of the disabling environment that he was in.”

 

How did you make the move out of the group home?

Paraphrasing from the podcast, Libby shares: 
“Because he couldn’t articulate his experience himself, we had to come up with a decision-making process and take a leap of faith to help him move out of the group home. Meeting with other peers and people that have gone before you, then you can see the thing that you want because someone else has created it and is living it. You can then see the pathway forward – this is so important.

You can see the evidence, or indicators, to a good life, that is there in other people’s lives, but they aren’t there in your family; this can help to take that leap of faith.”

 

How did you breaking through communication and behavioral barriers?

Paraphrasing from the podcast, Libby shares:

This is an ongoing challenge. We had the questions: Who is going to want to live with Matthew? Who is going to want to care for him?

It is what I call the “what ifs..” It is helpful to list out the ‘What If’s…”

What if… Someone does something to him..
What if… He loses the key…
What if… xyz…

This then becomes the basis for the safeguarding system we built.

We need to step into the unknown, but before that, there is a lot of planning and preparing.

By trusting and having a sound safeguarding system in place, we have found people, and people are out there. Sometimes it takes a while to find the right person.”

Eric shares, “ It is a myth that people that have a disability have to live with other people that have disabilities.”

Libby shares, “It is hard work. The social model of disability teaches us that it is going to be hard work. But, it was also hard work when Matthew was in institutional settings. In institutional settings, it was hard work to make a change because of the powerlessness [against the organization]. Now it [the social model] is hard work, just a different kind of hard work. For example, finding someone to live with Matthew. But now we have control and power.”

 

What are some of the other key lessons you learned?

Paraphrasing from the podcast, Libby shares: 
“We are not automatically an advocate. Families are blocked by low expectations, not having a sense of what is possible, past negative experiences. We are often making choices within very narrow perspectives.

Also, there is a difference in advocating for ourselves and others. Families need to be careful about what we ask for and what we create. The history of what has been created by families includes many of the services that have been started, and there is a pattern of segregation as a result.”

Eric: As families, it is our responsibility to educate ourselves. Take workshops, connect with thought leaders, listen to podcasts, and connect with families leading the inclusion movement. One step you can take is to take the FREE Empowering Ability Mini-Course. To learn more click here.

Libby and I also discuss the topics of life being more than a service, the impact of agency, family constellations (psychotherapist, Bert Hellinger), and tipple win thinking. You can hear all of these insights by clicking play on the podcast player below!

 

I express my sincere gratitude to Libby for coming on the podcast and sharing her story and wisdom!

 

Love & Respect,

Eric

 

Resources:

Libby’s Website: Incharge.net.au
Email: Hello@Incharge.net.au
Connect with Libby on linkedIn https://www.linkedin.com/in/chargeaustralia/

Sexuality and Disability, with Dr. Margaret Newbury Jones

In this conversation with Dr. Margaret Newbury Jones, here out referred to as Margaret, of SHADE Consulting and Counselling we dive into the topic of sexuality and disability. We discuss what self-advocates, families, and supporters need to know about sexuality and Intellectual/developmental disability (IDD). She answers the questions; Why is knowing the language of our bodies so important? Where do I go to find a partner?, What is the role of a paid supporter, and Should we be allowed to have sex and watch porn in the group home?.

Margaret’s career has focused on working with folks of all ages with intellectual and developmental disabilities (IDD) and other disabilities for 25+ years. She worked as a public-school special educator for 15 years before beginning to work as a consultant and counsellor focusing on trauma, sexual health and folks with IDD. She works directly with clients with IDD as well as their families and supporters and is known for providing engaging workshops for families, self-advocates, front line workers, and other professionals. She is most importantly a family member of a sibling with IDD, her best teacher.

 

Why is it so important for us to talk about sexuality for people with an intellectual or developmental disability (IDD)?

Margaret: “Everyone is a sexual being; it doesn’t matter if you have a disability or not.”

Eric: Other than sexually transmitted infections (STIs), pregnancy, general health are there other reasons we need to be talking about sexuality for people that have an IDD?

Paraphrasing from the podcast, Margaret shares; “Safety. People with IDDs are much more vulnerable to being abused and taken advantage of. Also, a lot of it is about autonomy and making informed decisions and not feeling like someone else gets to make those choices for you. We don’t have to allow others to make those decisions, that is a person’s right [to make those decisions] when they are an adult.

 

In terms of statistics, now big of a problem is sexual abuse?

Paraphrasing from the podcast, Margaret shares, “There aren’t any good solid stats – the research you referenced is from the 80s and 90s. [Eric referenced stat – 83% of women, 35% of men with IDD are sexually abused] The stats can vary from 2 percent to 60 percent. But what we do know, is that rates of sexual abuse for people with IDDs higher than the general population. Also, just like the general population, people with IDDs don’t report, don’t know how to report, [or don’t have the language to know they were sexually abused as we discuss below].”

 

What do self-advocates need to know about sexual health?

Paraphrasing from the podcast, Margaret shares: “Language – if folks don’t have the right language to tell us that something happened, how can they tell us? If you don’t know the language of your body, how can you tell somebody when something goes wrong?”

Margaret shares a story sex educator Meg Hickling’shttps://www.amazon.ca/Books-Meg-Hickling/s?rh=n%3A916520%2Cp_27%3AMeg+Hickling work where Meg was going into prisons and working with inmates and teaching them sexual health. When she had the opportunity, she spoke to sex offenders and asked them how they looked for their victims. The sex offenders told her that they look for people that don’t have the right language for their bodies. They said to her that if they do have the right language, they are more likely to tell. If they don’t have the language, they are less likely to tell because they aren’t having those conversations.

We also go deeper into the topic of consent on the podcast.

Margaret also shares that it is important that people that have an IDD know the basics of sexuality, sexual health, healthy relationships. On the podcast, she answers one of the most common questions she is asked by her clients with an IDD, “Where do you meet or find a partner?”

 

What do families need to know about sexual health?

Paraphrasing from the podcast, Margaret shares;

1) Make sure they have the language of their body.
2) Role of a supporter is a bridge to relationships, not to be the relationship.
3) As families, we need to let the person grow up and not be a perpetual child. If you are 50, you still have 50 years of life experience.
4) Recognize that puberty can be one of the most normalizing things that has or will happen to a person with an IDD.

What comes up in your work around menstruation?

Paraphrasing from the podcast, Margaret shares;

People are put on birth control to manage menstrual periods because families and caregivers feel like it is challenging to manage menstruation. We can teach menstrual management. Families will also say that the person is protected if someone abuses them. Margaret’s response is, “Does that make abuse okay?” We should be keeping them safe from the get-go.

We also discuss the issue of consent and menstrual management on the podcast.

Margaret shares, “We tend to do things that are timely. We don’t take the time to make sure that people fully understand, fully consent, and fully process what is going on.”

 

What do supporters and organizations need to know about sexual health?

Paraphrasing from the podcast, Margaret shares;

1) Define the role of the supporter as a bridge to a relationship, not being the relationship.
2) Organizations need to have a sexual health policy. Everything is then dealt with similarly, and it addresses the individual sets of values that people delivering the support have.
3) Supporters need to be aware of their own beliefs and values.

We also get into interesting questions of:

Should people with disabilities be able to have sex in the group home?

Should people with disabilities be able to watch porn?

To hear these answers, you need to listen to the podcast!

I thank Margaret for the engaging conversation and for sharing her wealth of knowledge on sexual health. Margaret has also provided us with a library of resources on sexuality and disability below.

Love & Respect,
Eric

 

Resources:

Sunny Hill Education Resource Centre (SHERC) – This is a lending library with many sexual health-related materials.

Email: sherc@cw.bc.ca

Website: www.bcchildrens.ca/sherc

Sexuality Education for People with Developmental Disabilities (2018) – Elevatus Training – www.elevatustraining.com

Life Cycle – How We Grow and Change: A Human Development and Sexuality Education Curriculum. Varicheck, S.M. & Tolle, R.K. (2008). Life Cycle Education Consultants. www.lifecycleeducation.com

www.real-talk.org

 

Websites (these are a combination of safe sexuality websites as well as websites addressing trauma/self-regulation):

• www.beaconhouse.org.uk
• www.safehandsthinkingminds.co.uk
• www.self-reg.ca
• www.northstarpaths.com
• www.booksbeyondwords.co.uk
• www.tascalberta.com
• www.teachingsexualhealth.ca
• www.safehealthschools.org
• www.urbandictionary.com
• www.pflagcanada.ca
• www.advocatesforyouth.org
• www.sexualityandu.ca
• www.planetahead.ca
• www.plannedparenthood.org/info-for-teens
• www.wontgetweird.com
• www.teenhealthsource.com
• www.goaskalice.columbia.edu
• www.teengrowth.com

 

 

Books

• Asperger’s Syndrome and Sexuality: From Adolescence through Adulthood – Henault, I (2006). Jessica Kingsley Publisher
• Autism-Asperger’s and Sexuality – Puberty and Beyond – Newport, J & Newport, M. (2002). Future Horizons
• Boys, Girls, and Body Science – Hickling, M. Harbour Publishing
• A Five is Against the Law! Social Boundaries: Stright UP! An Honest Guide for Teen and Young Adults – Dunn Buron, K. (2007). Autism Asperger Publishing Co.
• It’s Perfectly Normal: A Book About Changing Bodies, Growing UP, Sex and Sexual Health – Harri, R. (1994). Candlewick Press
• Protocol for Personal Care (Adult or child) – Available at Community Options http://communityoptions.bc.ca/about-us/protocol-books/
• Sex, Sexuality and the Autism Spectrum – Lawson, W. (2005). Jessica Kingsley Publishers

 

Dr. Margaret Newbury Jones Contact Information

www.shadeconsulting.ca

778-215-0132

info@shadeconsulting.ca

#058: What I learned Moving Out of Mom and Dad’s

It has been a little over one year since my sister, Sarah has come onto the podcast – and a lot has changed for Sarah. The most significant change has been Sarah moving out of mom and dad’s and into a home of her own. This single decision to move out of mom and dad’s made 1000 decisions for Sarah and our family. This one decision for Sarah to have a home of her own has allowed her to grow into the capable young woman that she wants to be.

 

Before the Move

On the podcast, Sarah shares her journey starting from leaving the school system and spending the better part of a decade living in our parent’s basement.

Sarah shares, “Mom and Dad did everything for me. I had no choice [living in their home].”

Our parents (and me) made decisions and did everything for Sarah - we acted out of love and with the best intentions… BUT, this created the institution of home. I’ve realized a person doesn't have to live in an institution or a group home to have choice and control stripped away.

Eventually, Sarah pushed hard to have her voice heard, which created a lot of conflict and tension in our family. It caused enough pain and pressure for our family to finally act instead of continuing to live our lives by default. We had a lot of conversations as a family and engaged with a facilitator to help moderate the discussion and plan an optimal path forward. Sarah wants a place of her own; however, mom and dad thought it was too big of a jump. So, we all agreed on the interim step of Sarah and me living together for two years.

 

The Experience of Moving out and Mom and Dad’s

July 2018, Sarah moved out of mom and Dad’s place and in with me (her brother).

On the podcast, Sarah shares how the move out of mom and dad’s house gave her the change of environment needed to open the door for her to develop valued roles of; contributing adult, roommate, and daughter. She also shares the ups and downs she has experienced in her new home when it comes to:

Decision making: significant increases in choice and control

Supporters: building and managing her support team (in replacement of mom’s caregiving)

Opportunity to do everyday things: meals, laundry, cleaning, etc.

Dealing with overwhelm.

Breaking down co-dependency: shifting the relationship with mom from caregiver to mother.

*Take a listen to the podcast to hear these insights.

 

What was helpful for you in making this change?

Sarah discusses the three things that were most helpful for her:

1. My support circle; helped to make decisions, to provide new ideas and perspectives, and to provide social and emotional support.
2. Talking through challenges to process how she was feeling.
3. Meditation.

Take a listen to this podcast to get Sarah’s perspective and the wisdom she has to offer you!

Bonus: If we aren't there for our loved one with a disability, who will be?

... If I am not there to care and look out for my son or daughter, then who will be? It is a big question, but it is also something we avoid talking about because we have to realize our own death. BUT, if we don't have these conversations - what are we leaving behind?! 

From the hundreds of families I have spoken with I've learned that it is a massive hole. If you are the go-to person for your loved one with a disability, and they are dependent on you and you aren't there for them anymore it is impossible for one person to step into your old shoes. It causes a ton of stress, anxiety, and disrupts several people's lives. 

This is why we need to think about the relationships in our loved one's life, this is why we need to be intentional about a Personal Support Network. In this video, I show you how to do this.

CLICK HERE to learn how.

 
Enjoy,

Eric

 

PS. Having a strong Personal Support Network for your loved one with a disability is the best way I've found to support someone after their parents can no longer care. BUT - a Personal Support Network is more than that, it will provide in ways that you could have never imagined in the short term.

CLICK HERE to learn how!

Bonus: The two things successful families are doing

Over the past few years, I’ve been thinking deeply about how to best support families with a loved one with a disability to create a happy and full life for their loved one - and a good life that isn’t dependent on parents (forever)…

I know this is possible because I have friends with disabilities who have created this life - my family is going through this transformation, and the families I work with are going through this transformation. In this video, I share one of their stories with you.

 ... and I've found that there is there is ONE key thing in common for all of these families… They have Created a Vision!

As families, we need to be able to imagine the best possible life for our loved one with a disability so that we can then create it.
 

Well, actually there are TWO things all of these families have in common. There are two paths that you can choose as a family (and neither is risk-free). In this video, I tell you about these two paths - and I share with you the ONE path that these families are choosing to create the best life possible for their loved one.

Bonus: How to create and deepen relationships

As families, we have the question of who will care for our loved one with a disability when we no longer can?

People with intellectual and developmental disabilities have less than 20% of the number of relationships compared to a typical person. 

This leads to loneliness, which is more harmful to our health than smoking a pack of cigarettes every day.
 
In this video, I explain how to build relationships. 

You can create a happy and full life for your loved one with a developmental or intellectual disability - that isn't reliant on you. You can make this transformation happen for your loved one and your family. 

To do this... We must elevate our expectations for what is possible. 

Start by focusing on relationships. In this video, I also show you how to create and deepen relationships for your loved one.