how we talk about disability

Hello, reader.  How are you doing?  Sometimes I make a social mistake.  Oops, happens to the best of us.  I’m still testing out my mouth and how to be a person among people.  Communication is important in community.  How we talk about disability affects how we’re perceived and treated.

what work is

My community member said something to me and Ming as we were walking around on a weekday.  She works for money, and said something about having a day off.

“Oh, me and Ming are disabled,” I said.  “All our days are days off!”

I smiled and made it sound luxurious.  My community member took that in.

I had trusted her to understand my tongue-in-cheek remark.  Of course being disabled is extraordinarily hard work.  I was joking.  True we don’t work for money, but we work to survive in ways that no one knows but ourselves.

Later I realized that disability should be joked about only with other disabled people, and the few folks who get it–the deeply connected people we share access intimacy with.  Making light of a life-long struggle of survival will be misunderstood by many abled people.  I was wrong to trust my community member to recognize my playful mirth.

how we talk about disability

Then I tried accuracy when an acquaintance asked me, “Did you get up to any good rest over the holiday?”  It was our first time seeing one another after Thanksgiving.

I took the opposite tactic as my last faux pas.

“Well, I’m disabled, so I don’t get any days off,” I told my acquaintance.

That’s accurate, Laura-Marie.  If only I could rest on a holiday, with an average amount of energy, pain, sensory sensitivity, and ability to go about in the world.  I don’t remember ever experiencing that.

My pain has its better and worse days, and my energy as well.  My moods and voices fluctuate.  Sensory sensitivity is on a wave also; my muscles and joints work better and worse at times…  But I’m always disabled every day, and my life is devoted to my wellness and Ming’s.

care work

I spend all day caring for myself and for Ming.

• movement
• feeding us nutritious foods
• wrestling with insurance companies
• and doctors offices
• medical appointments
• blood draws
• medication management
• equipment management
• disability and benefits paperwork
• body care
• reducing stress
• healing work like therapy
• neurofeedback
• radical mental health
• telling the truth to at least one person about what I’m going through
• tracking symptoms and needs
• saying no and enforcing boundaries
• actively advocating for ourselves
• rest
• prayer
• enduring pain and anguish
• planning for intense medical experiences
• precare
• aftercare
• asking for help
• learning more info about our disabilities
• making decisions about treatment
• accounting for change as all of this shifts as we age

There are so many things we do to stay as well as possible while living a meaningful life.  So many things we do, as well as the things we don’t do.  We protect our boundaries about the normal things we avoid, like food allergens and sugar, I don’t watch TV or movies, we don’t have pets, I didn’t have kids…

Living below the poverty line (as a result of the enforced poverty of disability) is also a job in itself.  Visiting food banks and pantries, managing scant resources, networking for mutual aid, seeing how much we can go without, worrying about debt, and juggling peanuts is the work of “not working.”

harsh

“I’m disabled, so I don’t get any days off,” came off as harsh.  Accidentally I swung too far from the flippant joke side, to the honest side.  I’m sorry I have the autism and don’t know how to tell the truth in a way that will be accepted.

Most of my life I stayed quiet and tried to be easy.  For some years, I didn’t talk much at all.  So I’m a middle aged person, but I lack conversational experience.

Looks can be deceiving.  Probably you think I will say a normal thing.  But often I will say a weird thing.

Thank goodness I’m always learning and open to feedback.  I want to tell the truth, but I’d rather not hurt people with my words.

Thank goodness many people love me and are patient with me as I make mistakes and become who I am.  I love my friends and chosen family who know my good heart– I didn’t mean to say something thoughtless.

one more thing

Often disabled people are cleaning up the story for you; we skip over the grisly parts for your comfort.  We avoid detail about what the health issue entailed, how long we were suffering how badly, what bodily fluids were spilled in what quantities, what cruelty we endured at the hospital, the indignities, and the deep injustice.

Only my therapist hears details of the violence and violation I’ve endured.  No one should even hear about such disgusting behaviors toward children and young people, let alone experience it.  I don’t trust any friend with that conversation.

I hide what paranoia and delusion feel like.  Curious people ask about my voices, and mostly my voices are fine.  It’s hard to explain the bad ones, and I don’t trust people to look at me the same after I tell them more about it.  They think they want to know, but what will the consequences be?

Depending on how you’re reacting, we will leave out whole swaths of the story so you won’t puke or run away.  How we talk about disability is highly edited for abled people to stay engaged with us, and I wonder how much long term harm this does, when you really don’t know what our survival looks like and think we’re exaggerating our needs.

The community member saw us walking around outside, looking happy and holding hands, because it was a day we could both walk around outside, looking happy and holding hands.  All the days I’m not leaving home, no one sees me.  The vast majority of disabled suffering is behind closed doors.

honesty

I strive to shift how we speak about disability to something more honest.  Illness, disability, childbirth, menstruation, pregnancy, lactation, menopause, losing our senses, losing our memories, challenges to mobility, excruciating pain, extreme states, dying, and death are real–some are inevitable.  Let’s not pretend they’re rare.

Disability is part of life.  My fat, disabled body is as valid as any thin, abled body.  I love myself unconditionally, and I love my disabled friends also.  I’ll tell that to anyone.