A U-turn

When we started June, those of us who agreed to publish in July, we connected out to some self-advocates. We got a lot of resounding agreement that this was necessary. Certainly many self-advocates have their own platforms, and there are ways other than a blog to get the information across. However, after our questions, some of our self-advocates hesitated.

Some have jobs where they feel already marginalized because of their disability. Why would they single themselves out further? Some, like the interview you’ll read shortly, don’t have to admit to their difficulties, they ‘pass’, and most would never think otherwise.

It is just one more reminder of how much further we have to go to be more inclusive. To find locations for folks to see that they can have success at every stage of life, no matter what that looks like. But we’ll give you one more perspective, from someone who did not want their name released.

It was easy to say, she didn’t want this interview. She even told me later, “I don’t like talking about this part of me, but I get it. If I don’t say it, who will?”

It is just one more reminder of how much further we have to go to be more inclusive.

Renay Marquez

An Anonymous Self-Advocate Voice

I’m interviewing someone with a disability. Trying to get her to specifically talk about her disability. We’ve known each other for years. But we’ve never really talked about her disability. I’ve seen it at conferences, she’s more likely pacing in a corner while listening to a presenter talk about their topic of work instead of sitting at a table taking notes. But she’s taking notes at the same time. You’ll see her stop and then go up to her notebook and write and then return.

When we get together and talk, she is more likely to never look at me. I’m used to it. I have other things to occupy myself when we converse.

The thing is, many folks with disabilities pass. You wouldn’t know they have a disability unless they told you, you’d see something familiar about their mannerisms. A stim. A hop. The way they don’t look at you, look past you sometimes. I’m very familiar with hers. She’ll look at a door, perhaps when things get boring to her. But when she’s on, talking about special education, you wouldn’t really know it. She knows her field well.

We went for a walk together. I will admit, while we walk, there is an alertness. I suspect it is because really she’s talking about things she doesn’t want to state.

I had to ask, “How do you travel? That doesn’t seem like something you’d like.”

“Well, I travel all right. Most of the time I travel alone. A few times I travel to people I know. And while I’m there, I might be a little too close like I depend on them completely. I might pace in the presentation room. I’m looking around, getting a feel for the space, checking out technology I might need. I’m making myself familiar so I don’t feel like I don’t know what is going to happen. I like being prepared.”

“Perfectionism?” I ask.

“Probably.” She replies with a shoulder shrug. “So the other things, what do you do for work? You said you have a lot of jobs.”

“Yeah, I work in a school. I know a few people with disabilities that don’t get to work in schools. I’m not sure why, but sometimes I can guess.” Her voice trails down. She views herself as fortunate.

“So you work in a school. Do you tell the students?”

“I pass. Until I don’t. I think a few students have seen me have a reaction. I know my coworkers have. I have a support system at work for my disabilities, my closest three coworkers know that if I step outside I might be dealing with one. I have ADHD and I have Autism. I suspect that my Autism annoys my coworkers the most. I know the ADHD is mostly controlled by the medication I take. But for the Autism, there’s nothing but reminding myself that I really do a lot of work in preparation so I can be successful. I have always been like that. It’s not easy: it’s exhausting being anxious that I did not prepare for something.”

“But what if you don’t ‘pass’ at work?”

“I really understand why folks don’t talk about their disabilities. There are things from their co-workers of surprise, of pity, and sometimes of just ignorance. I’m never certain what to deal with. It’s why I don’t tell my coworkers. They guess and then I might share. Or after years of working with others. It’s kind of a very private piece of myself that I get to choose who I share with. And not a lot of people understand that other people have run rip shod through my life with information that is less important. Another thing, my disabilities aren’t a part of my public persona. I don’t tweet about my disabilities to the general public.”

There are things from their co-workers of surprise, of pity, and sometimes of just ignorance. I’m never certain what to deal with. It’s why I don’t tell my coworkers. … It’s kind of a very private piece of myself that I get to choose who I share with.

Interviewee, name declined

“You do have coworkers who share that they have ADHD and Dyslexia…and a whole host of other disabilities with their coworkers and their students..”

“I do. And I understand why they do—being up front with students that the path to success for some is not an easy path at all is important. That people with disabilities are successful is also important. I don’t want to—I don’t feel I need to. My job is to show up every day and do my best with the students day in and day out. I am not an advertisement for a disability success or failure.”

The interviewee and I parted and I had to think a lot about what she said and why she said what she did. I know self-advocates that are successful and I would like them to step up. But I also appreciate the importance of their space. It was a reminder that each journey, even if it is supported, is a solitary journey. I’m just here to walk along side, and I’m glad for the company.


Inclusion From Square One will return. If you’re interested, connect with one of the editors and we will set you up. Thank you for your support in July. We will see you again shortly.

August 8, 2019

  • The whole being prepared thing:

    You don’t want to be caught short or out or miss out on the next opportunity, which is always better than this one.

    I will admit: I find perfection exhausting, if safe.

    Another self-advocate came out about something I had suspected about her for a long while and that she had found and acknowledged in herself.

    And the co-workers with learning disabilities [US sense] and disruptive behaviour disorders [which is what ADHD and ADD was called a few years ago in another book].

    And the students have a way of knowing without telling.

    I respect the way you do your job and the way you do business. You are a honest broker – and you can feel honestly broken.

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