Presuming Competence Takes More Than Words: A Cautionary Tale.

Ihe giving a treat to Ms Piggy.

Ihe giving a treat to Ms Piggy.

 

[This article is posted with Ihe’s permission]

I posted this image the other day on our Facebook page of Ihe giving a treat to Ninette’s dog, Piggy. I wrote this little bit about Ihe: “When we first met Ihe four years ago, he was terrified of dogs. But Ihe has a deep sense of empathy and kindness which allows him to move past his fears to a place of connection, including dogs. Ihe reminds us each day of the power of inclusion and the profound difference it makes in our lives.”  As I was writing that, I knew that I was masking some truths about Ihe in our program. By masking these truths I was not telling the full story of the remarkable person Ihe is. I was also failing to honestly discuss some critical issues I had with former staff and the mistakes they made in how they worked with Ihe.

I want to be very clear from the start that I am speaking of former staff, what I write about here happened years ago. The adult program staff I am blessed with now are among the best group of teachers I’ve ever had the privilege to work with.

Ihe came to our transition program with a warning label and a behavior plan. He hit, he slammed his fists and threatened people; plus he is large and had trouble walking any distance, which is an issue for a community based program. He came loaded with negative expectations and that negativity carried over into our transition program; negativity which was subtle most of the time and hard to manage.

It started with my staff constantly coming to me with “issues” about Ihe. Ihe processed information slowly and became frustrated easily if he wasn’t given ample time to work through information. Staff and I talked endlessly about giving him the space to process and language to help him express his frustrations. It would get a little better, but then happen again with more intensity. Then came complaints about his body and his physical size all couched in the language of concerns for his health. Red flags went up in my mind. I carefully observed the interactions of staff with Ihe and listened to their “concerns” at staff meetings. I came to understand that Ihe’s “issues” were in fact being created by us.

Despite pledges to positively regard Ihe and presume his competence, staff did the opposite. My staff created chaotic spaces around him; it was written in their body language, vocal tones and their constant anxiety that he might have a “meltdown”. All of these things pretty much guaranteed that he would. I don’t know if staff’s actions were intentional or a subconscious, but this is the classic “Helpful Helper” model, which is so common in our profession. My staff needed Ihe’s dependency; they needed his behaviors in order to frame themselves as behavioral “experts.” The staff spoke the language of self-determination, but self-determination was a threat to them: their own sense of importance, their need of control. It was never about Ihe, it was always about themselves.

I believe my former staff cared about Ihe, however they could never take responsibility for any of their actions, give up control, or understand how their actions actually infantilized and disempowered Ihe. This was my fault. I hired them and was responsible for their actions. It was a very hard lesson to learn. I mistakenly believed that all I had to do was provide an opportunity for people to work in a person-centered, self-determined program environment and they would automatically embrace it. I was wrong. It actually takes pretty special people to flourish in this system. In the end, I systematically replaced the entire staff, created new hiring and training protocols. The lessons I learned have not been forgotten.

For Ihe, the change in staff brought about immediate and sustained change. The complete story of Ihe is beautiful. It is told in the way he builds on top of his successes and the way he owns them and how they motivate him to take the next step. It is Ihe’s self-efficacy which is at the core of his success. What burns in the heart of Ihe should burn in all of us. Ihe, to me is a shining example of what non-judgmental, person-centered, self-determination, and presuming competence are all about. But these ideas need to be more than that collection of words, as educators, aids, and administrators they need to part of our DNA. They require us to be constantly mindful; to step aside and let our students lead; to listen to our student’s wants and needs at all times and not just when it is convenient for us to do so. The reward for us exists in the absolute joy of watching someone like Ihe blossom.

[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].

Adult Autism and Program Leadership: Yes, It’s a Big Deal.

Sur Mer 1 [Detail], mixed media, by Sonia Boue҆, 2014.

Sur Mer 1 [Detail], mixed media, by Sonia Boue҆, 2014.

The dust has begun to settle a little bit from a recent incident at an IEP meeting where a student’s family member attacked my ability to direct the ACAT transition program based on my autism. This is the original post and a fantastic response from Sonia Boué. My executive director, board of directors and the school district officials have treated this incident with the seriousness it deserves and I am going to trust the process for now as it moves toward a resolution.

A person involved recently told me that they had noticed how “comfortable” I seemed discussing my autism with the families of students, but they had not understood why it was a “big deal” until this incident. I appreciated these comments because they seem to hint at a recognition of the complexity of the very personal and delicate decision to disclose. But there is more to it than just that, and yes, it is a “big deal”.

I try hard to appear comfortable when I discuss my neurology openly with strangers. Appearing comfortable is practiced. Publicly disclosing either my autism or dyslexia always feels scary. It is not comfortable for me unless I am discussing it with other neurodiverse people. It is however extremely important for me to openly discuss it. It is a big deal that there are too few neurodiverse people in leadership positions in special education and there are far too many people who call themselves “experts” speaking about our neurology, which they clearly know little about. I’ve sat through too many IEP meetings listening to these “experts” get it insultingly wrong.

The day after the family member attacked me; I turned on the evening news and saw mass murderer, Elliot Rodger described first and foremost as having “Suffered from Asperger’s”. This of course is the prevailing view of intellectual and developmental disability in our society; burdensome, tragic, even dangerous. These views negatively affect each and every program participant we are meant to serve. Our ableist society fails to honestly understand neurological differences or to presume our competence. And it fails to acknowledge the existence of the negative neuro-normative constructs which permeate our special education system or how damaging and unsafe those constructs are. For me, being open about my neurology means speaking up to counter the overwhelming amount of misinformation which exists about our neurodiversity; even though that leaves me personally vulnerable.

I believe many special education professionals and caregivers have a firm intellectual and empathetic understanding of neurodiverse experiences. However my understanding is actual and visceral. My experience is lived, constant and valuable. The education and provider systems tend to focus on deficits and can overlook, or fail to even understand in the first place, the incredible ways in which neurodiverse individuals adapt to living in an often unfriendly neurotypical world. As much as anything, my role as an openly neurodiverse program director is to bear witness to astonishing ways our program participants adapt, grow and succeed;  and to bear witness as well to the struggles and pure originality to each individual life; this recognition is indeed a big deal at the deepest, living and breathing level of every neurodiverse individual.

Autism and my specific neurological wiring shapes and colors my life experiences. Growing up and living in a neuro-normative world has often been isolating and traumatic; my difference has been shamed. But it is just these kinds experiences which connect me to our program participants in a profound, intuitive and meaningful way. These experiences are the force which drives me to create programs which honor and respect the unique lives and voices of intellectually and developmentally disabled adults. And yes, this is for me, for us, a very big deal.

[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].

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

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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