Elevating what is possible for people with intellectual and developmental disabilities.
#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: email@example.com
Below are some examples of Joe Clayton's Artwork and Photography
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 silen
#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,
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.
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 t
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?”
#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:
My support circle; helped to make decisions, to provide new ideas and perspectives, and to provide social and emotional support.
Talking through challenges to process how she was feeling.
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.
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!
Informative and helpful in an empathetic way.
I love this podcast! Eric has wonderful guests with varied backgrounds and as a parent I have learned so much. I couldn't recommend it more.
Eric is great at providing honest and empowering lessons!