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

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

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.