Banging My Head on the Neurotypical Wall.

January 22, 2016 11 Comments

This past summer I served on a committee which was made up of special educators, parents of disabled children, and fellow service providers. One other committee member was disabled. I was the only Autistic member. Typically I stay away from committees because they are not very accessible to me; too many conversations, a maddening about of words, rules and procedures which are counter-intuitive to me. Committees require a measure diplomacy and subtlety which do not come easily to me. However, I joined this one because I felt that Autistic representation was critical to the committee’s mission.

Since all of the committee members were involved with neurodivergent individuals in some capacity, I hoped that they would have awareness or at least a willingness to learn about the critical importance of assuring accommodations which create an accessible space for their one Autistic member, and by extension all neurodivergent people. Unfortunately, I found just the opposite. I found an impenetrable wall of neurotypical privilege between myself and the other committee members as my attempts to assert my ideas often went unheard. My input was often ignored, framed as “biased” or more often or not, repeated back to me in a “corrected” form where the other committee members told me what I “meant to say”. I became uneasy about speaking up, and then all alone when I did speak up. The experience left me feeling crushed under the weight of the systems which serve neurodivergent people, but are managed and controlled of the most part by neurotypical and non-disabled people. And perhaps worst of all, people who can’t or won’t acknowledge how it is problematic. It seemed to me too easy for the other committee members to hide comfortably behind their neuro-normative groupthink.

At one point a committee member said, in the middle of a point I was trying to make, that, “Everyone is a little Autistic,” I was stunned. I immediately corrected the person; either you are Autistic or you are not Autistic, but it is absurd to state that it is something that all of us are. It was all the more maddening because none of the other committee members seemed to think the comment was disrespectful or inappropriate. No one said anything, which effectively erased my disability from their discussion. If everyone is a little Autistic then what is the point of listening to an actual Autistic voice? What bothers me the most is that all of the committee members have a stake in lives of neurodivergent people, yet they seemed oblivious to how their treatment of their one neurodivergent member reflected on the treatment of all neurodivergent people, including in some cases, their own children. They not only lack the actual experience of neurodiversity [despite the claims of being “a little bit autistic”], but many also lacked any understanding of disability theory and history whatsoever. Without understanding, our history, how are we to providing safe and inclusive space for neurodivergent people?

How can we ever start to discuss empowerment without first demonstrating a desire to give up power so that others can take part? In order to tear this wall of neurotypical privilege down you can’t simply give a neurodivergent person a seat at the table and believe your responsibility ends there. Forcing neurodivergent people to operate in neuro-normative spaces will always create a disadvantage for us. It’s unfair. It acts as a barrier and inhibits our ability to fully use our strengths. It is the responsibility of neurotypical and non-disabled people to understand the full range of accommodations and assure they exist in the first place. It should not be the responsibility neurodivergent people to constantly remind everyone. Neurotypical and non-disabled people have the responsibility to understand our history in detail [institutionalization, infantilization, segregation, sterilization, eugenics, etc.] and question how that history and its narratives contributes to their own understanding of our lives and how this narrative continues to disempower us. Neurotypical and non-disabled people have a responsibility to listen our voices without filtering out the meaning of the message in order to make themselves feel more comfortable.

This metaphorical, neurotypical wall erases our voices and the validity of our lived experience. Creating spaces where our experiences are listen to and valued will help bring the wall down. Until them, my head will remain really sore.

 

The Nuerotypical Wall

 

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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Intellectual Disability and Self-Regulation: Jason’s List.

June 30, 2014 1 Comment

Jason's list of program rules.

Last week, Jason took it upon himself to draw up a set of rules for his time in program:

1) Give teachers respect
2) Have my pants pulled up
3) Stay with the group
4) Be safe
5) No complaining in program
6) Be prepared for program
7) Be at cafe by 8:30

I asked Jason what prompted him to make his list. In typical Jason fashion he replied, “So I can remember not to mess up in program.” As Jason matures, his leadership qualities are starting to shine. Jason has made remarkable progress over the last two years; he is living independently in a group home, he works three days a week and he is finding positive ways to direct his inexhaustible energy to get what he wants and needs out of the world. This wasn’t always so; that inexhaustible energy was problematic when Jason first joined our ACAT transition program and we had some serious issues.

It isn’t unusual for participants coming into our community-based transition program to mistake the lack of physical boundaries for a complete lack of any boundaries. There are no classrooms walls here; no fences; no security guards. Of course this doesn’t mean there are no rules. There are in fact very strong rules and paramount among them is that we are all responsible for our own actions. If we mess up, it is our job to take responsibility for our mistakes and to find a way to make things right.

An essential element of the ACAT Program is Self-Determination skill development and an important component of Self-Determination is Self-Regulation, which involves the ability to control our behavior. This was difficult for Jason at first, particularly with personal space and anger control. Learning to regulate those things took a lot of practice and patience for Jason, his family and the ACAT staff who supported him.

When he had issues, Jason was given very clear boundaries about what was expected of him, what behaviors were not acceptable in program and what the consequences were of not staying within these boundaries. His actions however were never shamed and he was never made to feel that he was a “bad” person. We looked at ways the program could best support Jason by creating spaces where mistakes would be less likely to occur. We created a smaller group for him and matched him with participants he had friendships with. Along with being clear about boundaries, we provided him with a toolkit of alternative responses to situations where his emotions might become overwhelmed. We maintained a supportive and positive space for him even in those times when issues arose.

One day Jason stopped to get a cup of water at a cafe while his group waited just outside for him. He accidently bumped into a table and spilled some of a customer’s coffee. The customer jumped up and started screaming at Jason. In the past this would have the potential to be a major problem, but instead of engaging with the customer, Jason walked away and found his teacher, Johnny who supported Jason as he calmed himself. In the five years of the ACAT Program’s existence, this moment is one of the most beautiful I can remember. It was a defining moment for Jason and he has been the model of Self-Regulation and personal responsibility ever since.

Jason provides a great example of the importance of Self-Determination Skills instruction. Jason’s actions belong to him. His success is of his own making and he is wonderfully aware of that. The ACAT program provides Jason with clear expectations and boundaries. We provide positive, non-judgmental space for him to grow, take risks and at times to fail miserably without shame. Jason’s teachers, Johnny Diaz and Jason Guy are positive role models who care a great deal about Jason’s success. It is within this framework that Jason has excelled. I asked him how he feels now when he makes a mistake as opposed to how he felt two years ago. Jason said, “Now I know when I mess up, I can fix it myself.”

[Note: Jason has read this post and it is his wish that his story is shared].

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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Autism, Bullying and the Need for Safe Space: My Interview with Jonathan about his experiences in the special education system.

April 21, 2014 2 Comments

By Brent White

4/22/2014

Jonathan is a 19 year old participant in Ala Costa Centers’ Adult Community Training [ACT]. A few weeks ago he started talking to his group about some of the difficulties which arose for him after he was diagnosed with autism in the fourth grade; a time when he was taken out of a general education classroom and placed in a special education class. Jonathan remembers suddenly finding himself in a special education system where he encountered disempowerment, otherness and bullying. It is striking to me because of the Jonathan I have come to know who is sharp, good natured and warm. He is an emerging leader; a self-advocate with a growing interest in disability rights. I’ve seen his self-confidence grow in the short time he has participated in the ACT program, which seems in such a sharp contrast to what he describes in our interview. I have a keen interest in Jonathan’s experience because I am the director of his adult program and because I am myself autistic. 

[This is Jonathan’s story told with his permission and in his voice]: 

Brent: How old were you when you were diagnosed with autism?

Jonathan: Actually I think it was in 4th grade when I was diagnosed. In fifth grade I was moved into a different [special education] class.

Brent: Do you know why the school system asked for a diagnosis? 

Jonathan: My teachers noticed a problem with my speech, not turning in assignments, and I caused issues on the play yard.

Brent: Before you were diagnosed, did you feel like you were different from other kids your age at school?

Jonathan: Before I got diagnosed, I felt like I was exactly the same; a normal person trying to live my life and get through class, but also I remember a year or two later I developed a tick. I felt I was accepted; I had friends, and then things changed.

Brent: Did you get to sit down at a table and have a meeting with teachers before they placed you in special education classroom?

Jonathan: Yes at school, in front of my mom, in a closed off room.

Brent: What was said at your meeting?

Jonathan: “Jonathan you are a great guy; you try your best, but we are going to put you in a different class to try to make it comfortable for you and to place you with other people like you.”

Brent: What did you think about teachers telling you that they were going to place you in a different class?

Jonathan: I was young and I just said yes. That’s when things started happening and I didn’t have a choice. I got picked on and bullied. I was in the singled out group vs. the whole school. And it didn’t feel great.

Brent: Did bullying start immediately?

Jonathan: Yes, all different forms of it, but around one main point – “You’re disabled”; “You suck”; “You’re the R word”. All of it! One guy says “Hey fatso,” and eventually everyone follows. It leveled out in middle school and I remember I got picked on a lot less when I joined sports teams.

Brent: Were 6th or 7th grade easier for you?

Jonathan: 6th grade was okay, but 7th, I really struggled. In junior high I went to a private school for students with disabilities for the 6th-12th grades.

Brent: Why did you go into a private school?

Jonathan: They said that it was better for me and I would excel and I would do better with people with similar needs as me. 

Brent: Why was the 7th grade so bad?

Jonathan: 7th grade was a nightmare. The teacher was completely new and didn’t know what they were doing.

Brent: Did the bullying increase? 

Jonathan: Well my behavior increased, because I was not myself. I was seeking negative attention and getting myself into trouble.  It felt like a prison, everyone that got in wanted out. We all purposefully tried to get in trouble and run out.

Brent: Did you talk to your parents about this and say “hey I’m miserable and this is like a prison”?

Jonathan: I told them and they said it’s just a few more years and you’ll be done.

Brent: You stayed until you were how old?

Jonathan: I think 15.

Brent: Then from 15 you went to….?

Jonathan: 10th-12th grades I went to one school. The academics were much harder and there was a basketball team and football team.

Brent: Did you join the basketball and football teams?

Jonathan: Yes, and that’s where I bumped into someone I knew from the other school.

Brent: So you made a friend!?

Jonathan: Yes, he had the same diagnosis as me and we were best buds.

Brent: Did you have friends or best friends before 4th grade?

Jonathan: Well that’s where it gets really tricky. I don’t remember having good friends before 3rd grade. I definitely remember the enemies.

Brent: So you had no friends between the 4th through the 10th grades?

Jonathan: Yeah.

Brent: One more question; it’s abstract

Jonathan: About art?

Brent: No about you. So if you, the Jonathan today could go back in time and talk to the Jonathan in the 4th grade who is about to go into the special education system, what would you say? What advice would you give?

Jonathan: It’s actually pretty hard. I could start off by saying to myself, “Stay away from bullies and work harder than you’ve worked before; hang low and try to stay under the radar.” I could say; “Try not to attract attention to myself.” It always finds you again, just like that new kid feeling. The question is really hard and I don’t know how to answer. 

Brent: How would you make your 4th grade-self feel better?

Jonathan: Maybe standing up for myself and say. “You know what? I’m not having this.” And I wouldn’t care about being a teacher’s pet if it got me away from bullies. Maybe standing up to parents and letting them know that I’m really not comfortable here and I want to get out of here.

Brent: How is Jonathan today, the Jonathan who is out of high school? You’ve moved and started a new life here in the East Bay.

Jonathan: That Jonathan is going through a lot of transitions.  I do say that is part of me. Besides transition, I’m learning how to be independent and I’m learning skills like cooking. Before the ACT program, I didn’t know anything about cooking. But now I’m much more open and I feel like with this problem, I’m challenging myself more to do better and think better. And make smarter decisions that could have pros and cons either way.

Brent: Your experience was traumatizing. But do you feel like you’re optimistic now?

Jonathan: I’m confident. I’ve learned more skills that will allow me to deal with bullying compared to my 4th grade self. I can’t say I’ll never be bullied or picked on.

Brent: Sounds like something we should work on together.

Jonathan: Right now I’m happy. The worst part of it all was being singled out and not having a choice and they kept telling me that I had a disability and learning issues, but for all that they never gave me any history about that .

Brent: I’m so sorry you ever had to go through that. Do you feel positive about being autistic now?

Jonathan: I’m comfortable with it. I’m learning to handle it better and like I said, making better choices and learning new things. I’m actually kind of happy I’m autistic because it helps me see the world differently and also understand my past, because there is a lot to learn about myself. Autism is part of me and I’m not going to let anything stop me from living my life. 

Brent: That is a really beautiful thing to say Jonathan. Thank you so much for sharing your story and putting up with all of me questions.

Jonathan’s story is compelling and it points out the struggles many young people have within a special education system which can be stigmatizing, disempowering and even unsafe. I find Jonathan’s resilience remarkable. I think it would be easy for him to blame his troubles on autism and for it to become a negative focus in his life. This as much as anything speaks volumes about the strength of Jonathan’s character and his ability to overcome and to move forward.

Jonathan’s story illustrates another important issue; the need for safe spaces. Creating safe spaces should be the foundation that any program which serves the needs of developmentally/intellectually disabled folks is built on. Safe space means physical and emotional safety.  It is a non-judgmental space where differences are celebrated and never shamed; a place to truly be yourself. It allows room to take risks, fail, and learn from those experiences; a place where it is ok to make mistakes; a place where everyone is heard and respected. Jonathan’s story is an example of why this is essential. 

I’m happy that Jonathan chose the ACT program and that I’ve had a chance to meet this terrific young man. From the ground up both the ACAT and ACT programs have been designed as safe spaces. Hopefully this is a place where Jonathan can find support, encouragement and the respect he deserves. 

Jonathan at the Ed Roberts Campus

Jonathan at the Ed Roberts Campus

Jonathan patiently allowing me to take his picture.

Jonathan patiently allowing me to take his picture.

[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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