Empowering Ability Podcast

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.

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 protected]

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 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

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

Eric Goll 22:30

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

Joe Clayton 22:45

Eric Goll 24:16

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

Joe Clayton 24:28

Eric Goll 25:31

Joe Clayton 25:36

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

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

Eric Goll 33:06

Joe Clayton 33:17

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

Eric Goll 36:26

all include it in the in the show notes in the blog for you. Joe's Email: [email protected] 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

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.

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, 

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

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.

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.

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.”

Paraphrasing from the podcast, Libby shares: 

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.”

Paraphrasing from the podcast, Libby shares: 

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.”

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..

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.”

Paraphrasing from the podcast, Libby shares: 

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

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.

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.

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].”

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?”

Paraphrasing from the podcast, Margaret shares;

1) Make sure they have the language of their body.

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.”

Paraphrasing from the podcast, Margaret shares;

1) Define the role of the supporter as a bridge to a relationship, not being the relationship.

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,

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

Email: [email protected]

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

• www.beaconhouse.org.uk

• Asperger’s Syndrome and Sexuality: From Adolescence through Adulthood – Henault, I (2006). Jessica Kingsley Publisher

www.shadeconsulting.ca

778-215-0132

[email protected]

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.

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.

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.

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.

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

... 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?! 

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!

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.

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

How to create a life worth living? … am I implying that there are lives that aren’t worth living? This a big question that I ask you to consider for yourself.

People with developmental disabilities are devalued and suppressed (largely unconsciously) by society, our families and even ourselves (I am guilty too).

When a person is devalued, it is very difficult to access the opportunities that everyone else can access, and often results in isolation, loneliness, and suffering. Again, I ask - A life worth living?

Well, what I do know, is that I can do better, and we can do better, and our society can do better.

And, and it starts with a vision.

Why do we need vision? Well, as human beings the sense that we trust the most is our eyes, we are looking out for dangers and rewards. Also, where we look is where we go - If we are surfing and we are looking at the rocks, we will end up on the rocks, if we are looking at the beach, we will end up on the beach. Here I am talking about vision as one of our 5 human senses. However, these truths about our sense of vision apply to our future. If we can imagine, or see in our minds, where we want to be 5 years from now... we can trust that we can get there, and we move in that direction. We are looking at the destination we want to get to 5 years from now and will move in that direction, just like the surfer that looks at the beach and steps off their board into the soft sand (instead of crying out for help to be saved while being pushed upon the jagged rocks).

In this conversation with Michael Kendrick, we discuss 'Imagining Better" and we attempt to answer; What is vision? Why is vision so important for people with IDDs? and, How do you go about creating a Vision?

Michael Kendrick PhD. is a well-known international consultant in Human Services. Michael is involved in consulting, education and evaluative work with many governments, private agencies, advocacy groups, community organizations, universities and colleges across the globe. His work has involved training, evaluations, strategic planning, critical problem solving and confidential advice in the areas of mental health, disability and aging with an emphasis on persons requiring long term support.

What is Vision (the future looking kind)?

MK: "It is the way we see the world. It differs from one person to another. It is possible for people to have different content in their vision. We might have no vision on some subjects because we have never seen them before, where other areas we might have detailed visions. Vision might change over time - our life experiences shift our vision.

For example, the decision to see the good in people would be a way to approach people as if there is good in people. If your vision is that people are nasty or unpleasant, then the way you will see people are nasty because that is what you are looking for."

Why is it important for an individual with a Developmental Disability to have a vision?

MK: "A vision with opportunities can create life-giving possibilities. Without that there can be no sense that these possibilities exist. [For example] A lot of people with disabilities were raised with the belief that work and employment would not be a part of their future. This persuades people through conditioning and reinforcements [what they will not work] through other people’s world views. This might mean that people have many undeveloped, unrecognized potentials and capacities that are never explored because of the limited vision for them and also the conviction that they don’t exist."

EG: If you don’t have a plan, you are part of someone else’s plan, and their plan might not be that good for you.

Society's Collective Vision:

MK: "There is also a collective vision for society, such as the indigenous people in Canada is one that is devaluing. All societies tend to produce devalued groups at the margins. People might not be conscious of it at the surface."

People with DDs are devalued by society. How do you break free of societal devaluation?

MK: "A disability is seen as a negative feature of a person, people then generalize from the disability to the person entirely. You are no longer a full human being, you are a human being that is lacking. If you wanted to change that, then you would have to say that your disability need not impact the fullness of your life potentials.

With the person-centered movement – it is the person that matters, not the disability. It starts with what is the fullness of this person’s humanity and how can this be realized. The person is seen as full of potentials, notwithstanding that they live with some sort of impairment.

Be honest and accurate about the disability, but not giving it more emphasis than its needs. Living with the impairment in a practical way."

How do we go about creating a vision?

MK: "People with developmental disabilities are much more likely to be in segregated settings.

We can ask, What would be the inclusive or socially integrated option, vs the segregated option?

Families have been schooled for the segregated option. Need to ask the question, what would the inclusive option be?

There might be impediments, but that doesn’t mean the person can’t join, but we just need to figure out how to overcome it. What would support the person to be successful in that situation?

Vision can shift, and it can create new life opportunity. Vision creates realities.

From Social Role Valorization (SRV) we can look at the Culturally Valued Analog (CVA). [CVA is simply] What would a person of the same age be typically doing with their life? If you are 6 years old, would you be in school? If you are 25 years old, would you be working or furthering your studies? It helps people look at things in normative terms, which builds vision for what the person could conceivably access.

You find your place in the CVA, to do what suits you by following things you might be interested in. CVA is massive and there are so many opportunities, you just need to find what appeals to you. [You can ask] What resonates with that person’s nature?"

Where do I start when creating a vision?

MK: Always do things with others. This gives you more resources than trying to do it yourself. Not everyone is good at imagining better, you want to pick people that are imaginative. You build vision over time - revisit and refashion on an ongoing basis.

Should you discuss shared world views and values before starting the visioning process with others?

MK: "To the extent that you can do this, it is very consciousness raising. It makes us aware of values, principals and also priorities that people have. For instance, people don’t like to do things that are difficult. When you are going to break new ground, you have to open yourself up to new challenges. You have to look for people that can not only imagine better but are also interested in the doing.

[Also,] seek examples of imaging better. If someone has already achieved what you are doing, it is conceivable. For example, in the early days when we were trying to get people a home of their own, there weren’t many examples. Now there are many.

See what people have already accomplished. Stories and videos.

Join social networks that share a common interest. For example, joining a group of other progressive-minded families. It is harder to do this in isolation."

If you are looking for examples and ideas a good place to start is the Partners For Planning Learning Centre. 

Michael Kendrick and I also discuss family mentorship, role modeling, life-giving vs live-denying choices, and leadership on the podcast. These are important parts of the conversation, which you can access by clicking on the player below.

In closing MK Shares (in summary):

“Vision won't prosper unless there are leaders that mobilize people around the vision. You have to have buy-in and you have to win the buy-in of others. [This is] Not just individual leadership, but collective leadership. Investments in visionary leadership are a good investment. You also need leadership renewal because it is a long journey. People need ways to become renewed and to get energy. A lot of this comes in the way of social networks. Renewal of vision is important, so you need renewal. It takes leadership to get the implementation of vision.”

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Love & Respect,

Eric Goll