Inclusion Doesn’t Mean That We Become So Invisible That You Don’t Ever Need to Think About Us.

April 15, 2015 3 Comments

Our adult transition and adult day programs are both community-based. Our participants and teaching staff constantly bump up against the negative stereotypes and everyday ableism that many community members harbor towards intellectually/developmentally disabled individuals. For example, two incidents occurred last week. In one, a community member came to my office to express concern that one our adult participants was “allowed” to independently take a dance class without direct supervision from her staff. The staff, who were in fact, waiting respectfully right outside of the dance class. Two other teaching staff members were yelled at by an AC Transit bus driver for “allowing” participants to ask the bus driver to lower the wheelchair/accessibility ramp and to tell the driver where they were going. My teaching staff does a remarkable job of remaining calm when they are confronted by community members, but often those community members are handed my business card and asked to call me directly.

I know I am supposed to be diplomatic and I try, but I see, hear, and feel the same ableist nonsense every day. It is hard to encounter the same misconceptions over and over again. So, I thought I would give the community some tips on how to deal with situations they don’t understand:

  1. Slow down, listen, and be patient. This will go a long way toward helping you understand what someone is trying to communicate with you. The guideline we use in our programs is: when you ask someone a question or make a request, wait as long as you possibly can for a response. Then wait a little longer. Intellectually/developmentally disabled individuals process information differently and it may take us a little longer to respond. There is nothing wrong with this.
  2. Our participants are adults. They deserve the same respect as any other adult. Intellectually/developmentally disabled individuals have been historically infantilized- framed as children no matter their age. This is unbelievably disrespectful. You should stop this.
  3. If you have a question about one of our participants, ask them. Don’t ask their teaching staff. It is disrespectful to the participants and the staff is just going to refer you back to the participants anyway.
  4. Presume competence. This one is easy! Presume that each individual has strengths and the capacity to learn and grow. Of course it might mean that you need to rid your mind of the negative stereotypes about intellectually/developmentally disabled individuals you have come to accept as truth, BUT it will free your mind. I promise.
  5. It’s OK to be different. Remember just because someone doesn’t do something in the manner or the order in which you do it, doesn’t mean that they are doing something wrong.
  6. Communication isn’t just the use of words. Communication is deep and complex. Words are limiting, but watch someone communicate with their environment by using their body, or flapping their hands or arms. Listen to the language of stimming- it is often more beautiful than words.
  7. We all have the right to fail. Our program believes in the dignity of failure. This is how we all learn! One of the biggest burdens the special education system places on our backs is that everyone is afraid to let us fail. Failure, dealing with failure, overcoming failure makes us stronger. It makes us adults.
  8. We all have the right to take risks. We learn by doing, by making mistakes, by struggling and finally figuring it out in our own way. I’m not talking about dangerous risks, I’m talking about the risks it takes every day to be a human in the world: to ask for a job; to ask someone to be your friend, to ask for a kiss.
  9. Trust in the power of struggling. The world for intellectually/developmentally disabled individuals is more often than not, chaotic. It may not appear that way to you, but it is to us. We learn to adapt and the ways in which we adapt are pretty amazing. The way we measure success is by how well someone adapts as opposed to how well they can pass for neurotypical.
  10. We become self–determined, empowered individuals when we are provided spaces to try and succeed. This cannot be accomplished by being shuttered away in some classroom or some other incarnation of an institution. We need to be in the community, working on skills hands-on, and in real-time. And just to note, this is not accomplished by herding large groups of disabled people around in vans under the ever watchful eyes of hovering staff.
  11. The community belongs to us just as much as it belongs to you. I know this is hard to understand, but just take a deep breath and accept it. We have every right to be as deeply included in the community as anyone else. When we talk about inclusion we are not talking about passing as neurotypical. Inclusion doesn’t mean that we are invisible to you and you never have to think about our lives, our history or your part in continuing to pathologize, devalue, infantilize, and isolate our lives.

When you think one of our staff isn’t supervising, you are incorrect. We believe that our participants are all adults learning how to adapt and be in the community to best of each individual’s ability. We give participants respect; we do not hover, restrict, constrain, shame, or in any way coerce participants. We support through mindfulness, acceptance, empathy and presuming competence. We believe that inclusion is an equal partnership.

And if all of this seems too difficult, then try being kind instead of patronizing, this is always a good place to start.

Sincerely,

Brent

 

acceptance-revised

 

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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Presuming Competence Takes More Than Words: A Cautionary Tale.

June 13, 2014 2 Comments

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].

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