This is me making some sense of some stuff.

I have a disability. I am disabled. I was born with a club foot.

I don't know if I "count" or not as part of a community of disabled people.

Many people assume that I'm not disabled.

I acknowledge my privilege. My disability hasn't (yet) resulted in me facing discrimination or exclusion. Likely in part because I'm a cis white older dude, and partly because my disability is pretty much invisible to most.

Here's some things I can't do, and can do:

1. I can't speak for others with respect to their disabilities, including other people that were also born with a club foot.

I *can* speak about my own disability and how it impacts me.

2. I can't fully understand the lived experience of someone with a different disability than me, recognizing that some aspects may be similar.

I can do the work to better understand the lived experience of others with disabilities.

3. I can't pretend that I often don't know if I should disclose that I have a club foot, for fear that others with disabilities will think of my disability as trivial.

I can just keep fucking doing the work and stop worrying about what other people think.

4. I can't fully represent the needs of people with different disabilities in my work without working with them directly.

I can work with people with disabilities and ask their permission to share, represent their story as best I can, and ask them to vet/review how I represent.

After talking with various disabled people/people with disabilities this year, I don't even know how to talk about myself.

Do I prefer person first language? ("I'm a person with a club foot") Do I prefer identity-first language? ("I'm limb-different")

One thing I do know is this -- I tried very hard to pay attention to every single person that I worked with and how they:

a) referred to themselves (eg, Deaf, hard-of-hearing, Blind, visually impaired, 'has autism' vs 'am Autistic')

b) how they spelled their name, including capitalization. If their bio/profiles included all lowercase spelling for their names, that's what I did when I wrote or shared.

c) pronouned. Whatever their pronouns were, that's what I used.

d) how they wanted to interact; whatever the best communication/interview/whatever medium was for them -- that's what we used. Text based, audio only, video call, whatever worked for them.

Some of the people I talked with were ambivalent about how I or others referred to them. Others cared more. My default position became "This has to be on your terms. This is your narrative, and your story to tell, so I want to make sure I share it in a way that is respectful"

Here's some of the questions that I asked as I was doing the work:

"Are there other ways you’d like to contribute to this project?"

In other words, I wasn't in control of everything. I didn't say when, how, and where you can contribute. You have a say.

"Do you have a preference of person-first language or identify-first language? Any guidance for me on that when I’m talking or writing about the things I’ve learned from you?"

See a few tweets above. We all need to actively seek out this guidance from participants.

After some discussion about the upcoming research session, I'd ask:

"Does that feel right?"

That was a way for me to gauge whether or not I was on the right track, or way off base with my approach to the actual research sessions, as well as to inclusive design in general.

My final question was more of a request:

"I’m learning how to do this better, so if I offend you, or ask anything in a way that isn’t respectful, please let me know so that I can get better, and so that I can share with others that might also want to do some research with people with different disabilities.”

Of course, I did my very best to not offend, and to be respectful.

But if I did mess it up, I wanted each participant to feel that they could literally just call me out on it.

This last part is something that I can't emphasize enough -- there's a HUGE difference between accepting critique and inviting critique.

With that last request, my hope is that people I was working with felt completely at ease critiquing my methods or any other part of the work.

We have to *invite* critique.

That's how we get better at inclusive design.

I'm saying all of this as I stand at my desk, typing away, feeling my left leg getting numb on the outside of my thigh, not knowing if it is because of my club foot, or could just be because I'm the opposite of flexible, and NOT doing a good job of self-care right now.

End of rambling thread. I need to go sit and contemplate my own existence for a bit!