Intellectual Disability and a Path to Overcoming Stigma: My Conversation with Sam

We started the ACAT program in 2009 with six students. Sam is one of those original six. He was 18 years old then, but now 23, he participates our ACT Adult Program. He is very friendly and laughs easily. One of my great joys in program has been watching Sam’s confidence grow over the years.

Sam was ACAT’s first student to run his own IEP meeting and through that process, he and I had an opportunity to discuss what his disability meant to him. Intellectual and developmental disabilities are often framed within the construct of tragedy and burden, but the first time I asked Sam how he thought his disability effected him, he said, “I get nervous and I have trouble remembering things.” That was it, hardly tragic or burdensome; he needed support just as we all do. 

This year Sam became our first participant in the Youth Action Council on Transition (Youth ACT) which is a nationwide demonstration program designed to teach leadership and advocacy skills to disabled youth. 

This is our conversation: 

Brent: I know you have trouble remembering when you were placed in Special Eduction, but you believe it started in high school? 

Sam: Yes, it was at Berkeley High. I did not have Special Education until High school; not in middle school.

Brent: Why were placed in Special Education?

Sam: Because my learning was bad. It’s hard for me to say. I had trouble getting my homework done. Actually, my reading is good, but I usually had trouble taking notes or when a teacher explained something, I don’t get all of it, and when I get homework at the end, I struggle with it. In middle school I started having trouble with my homework.

Brent: Do you remember your first IEP?

Sam: Yeah, we had an IEP. I think that was my first IEP. I remember seeing a psychologist. He came to see me in class. I also remember they put me in speech; speaking was hard for me, I stuttered.

Brent: Did you understand that you were being diagnosed with a particular disability or offered services when the psychologist was talking to you?

Sam: No, the psychologist did not talk about my disability. I didn’t really know anything.

Brent: Do you remember how you felt during that time? 

Sam: Different; I felt it was a bad difference for me, because I did not know what was going on for me, and how I’ve been put into special education and they were talking about putting me in a transition program when I got out of high school. I mean, my IA teacher helped me plan all this, the psychologist, speech, case manager.

Brent: You ran your own IEP meetings as part of the ACAT Program, I remember that this was that the first time you saw the diagnosis of “Intellectual Disability”.  

Sam: Back then I never heard of that word, “Intellectual Disability”. I remember in my old IEP meetings the teachers used the say the word, I don’t want to say it. I can just say, “MR”. I didn’t appreciate it. I was really embarrassing to be called that word. it’s disrespectful. Back in high school, I was treated with disrespect because that word was used. 

Brent: You felt upset being defined as “MR”?

Sam: I felt I was really being treated the wrong way when that word is used. it’s like, whenever it was used, it felt like I was not independent, learning bad, struggling with homework. I felt like my life was uncomfortable.

Brent: I remember you saying once that you thought your parents were disappointed when you got diagnosed?

Sam: Yeah, they were like, why is your learning so bad? I think now they are over it. They are proud of my independence. 

Brent: I think they are proud of you too. We’ve talked in the past about you defining your disability in terms of how it feels to you and how you think it effects you Can you talk about this? 

Sam: What it feels like having my disability is that it feels different. How it affects me is that it gets in the way of me; i gets into my mind, and prevents me from going to college. That I couldn’t go to college just to take classes because it was so hard. What it feels like me having a disability is that I feel like I am somewhere that’s different than being on the right way. 

Brent: What struggle is hardest for you?

Sam: I would say classes is the most of what I struggling with. The other things I am getting the hang of, but classes are hard. That’s what the disability is like for me. It makes me nervous to go to school. I try to be independent in my classes, because of my disability it’s difficult to handle complicates things. That is my disability.

Brent: I know so far college has been frustrating for you and we are working on ways to help. I know you’ve accomplished a lot of good things. Can you tell me about some of those? 

Sam: What I’ve accomplished so far is managing my money and I can get around the community. This changed my life in a better way; I can get around. This is different from high school, where I could not travel by myself.

Brent: Learning to travel was a big deal for you?

Sam: I was really nervous at first, but my confidence was like, “I want to try to do this, and learn it.”

Brent: This sounds just like you! You get nervous and then you figure out how to try things and overcome those nervous feelings.

Sam: Yeah, now I learned how to do this and it does not make me nervous

Brent: Now with the YouthACT Leadership Program you’ve had a chance to do a lot of things you’ve never done before.

Sam: I’ve never been on a plane or to another state. I’ve done that now. I went to Washington DC as part of YouthACT. 

Brent: What did you learn by going to the YounthACT training in Washington DC?

Sam: I am learning how to be a leader and how to be an advocate for other youth with disabilities; to transition into adulthood and independence.

Brent: And you are currently working on a project about the Disability Rights leader, Ed Roberts?

Sam: Yep, mostly telling people about Ed Roberts and disability rights.

Brent: What else are you doing now that you’ve never done before?

Sam: I have a job. In high school they had a workability program, and my IA went there with me. 

Brent: Did you find it on your own? What is that like?

Sam: I found it on my own. Before, I never knew about having a job and making money. It makes me feel happy. I would say I feel some confidence for jobs, if I am able to do it, I just do it.

Brent: Do you feel like you have overcome some of the earlier difficulties?

Sam: I feel like I am really getting the hang of myself. I am not backing away just because I have a disability. I try to move myself toward new things, even if I never experienced it, I try it until I say, “Oh, I like it!”

Brent: Do you feel proud of yourself?

Sam: Yes, I feel proud of myself.

Brent: I feel proud of you too. Do you say it is possible to have an intellectual disability and be proud of yourself as a disabled person?

Sam: I would say yes. My life has been changing a lot. I am really confident, and my independence is really good. I am thinking of moving on.

Brent: Do you think it is possible for other disabled youth to accomplish what you have? 

Sam: Yes, if they are learning and getting there. For me, I have a disability. I don’t go all the way, I just take it slowly, step by step, until I reach far away. I am proud of myself for doing all the stuff that I’ve been through.

Brent: Is it ok for me to post this interview online for people to read?

Sam: I am comfortable wanting people to read about my life. When they read it, they’ll say, “Wow, he’s doing awesome!”

Summary

Sam’s discussion of being referred to as “MR” was uncomfortable for him to talk about. He is right, it is an offensive term and a horrible label to saddle someone with. I’ve never met a person diagnosed as mentally retarded who did not feel shamed by it and yet we only officially changed term it to intellectually disabled a few years ago. The process of transition to adult life is made even more difficult by shaming and stigmatizing within systems of services for ID/DD youth. 

I am proud of the wonderful things Sam is accomplishing. I know too that it has not been easy for him and that every move forward has come with a great deal anxiety. The depth of his accomplishments needs to be appreciated through this lens. And when we view them through the lens of the stigma as well, the real beauty of his accomplishments come into better focus. 

I hope that the support he has received in the ACAT and ACT programs has helped Sam by providing a space for him to take risks without fear of judgement or shaming. But the praise belongs to Sam. This has been his hard work, his journey and his success. I can’t think of a better person to take on the roll of youth leader and advocate. 

[Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California].

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