Disability is real. I’m harmed by people telling me it isn’t. Please acknowledge my differences and respect them.
Years ago I told my friend about some mental health issues I experience, and he said, “Yeah, everyone’s crazy.” That could be true, in a way? But many people are able to work full time, and some can’t. I felt invalidated. My friend expressed no curiosity about my big moods, times of paranoia, or the voices I hear. Mostly I want respect for my differences. Instead I experience dismissal.
When I mention a disability to someone who’s abled, I’m almost always met with resistance. My disabilities are invisible, which means to many people, they don’t exist. Almost never does someone greet my disabilities with curiosity, open-heartedness, or kind questions. Instead it’s deflection, invalidation, “how dare you complain when you have so much?” or “I suffered through hell, so you should too.”
how to show up
I’ve seen wellness advice telling me that if I show up authentically and kindly expect the best, I’ll be welcome and respected. But that’s just not true. A lot–a lot–a lot of differences, you can’t show up and be accommodated, because the disabilities are considered too much. That’s reality–that’s my life.
If you see me and decide, “Laura-Marie is ok–she’s doesn’t have differences,” that’s because I’m working very hard not to overwhelm and inconvenience you. To leave my house, I make a ton of effort to be an acceptable person. If you see me and I seem typical, that’s because I’m working hard to seem typical, so you will welcome me.
Sitting on my hands to try not to stim, making the right amount of eye contact, not laughing at inappropriate moments, trying not to rock my body rhythmically, trying to speak the right amount and stay with the group tone and topic… Being appropriate is very hard work for me.
Not to mention enduring noise, visual distractions, problematic smells, too much light, being bumped, and other sensory harm. All while sitting on a chair that seems about to collapse, in a small space, through a meeting with no end time, and being expected to stick around afterward to clarify something, when I used all my spoons an hour before.
There’s huge preparation and recovery time for being social, and you don’t see what only Ming sees, as the person who lives with me.
Who isn’t coming to your meeting? You usually don’t know, because they didn’t come. Whether it’s wheelchair access, sign language interpretation, considering the needs of people who have sensory processing differences, or can’t endure the violence in your video…
If the world seems full of abled people, that might be because the disabled people are at home. It can be way easier not to try. Or the disabled people don’t have a choice to attend because they are stuck in group homes, hospitals, skilled nursing, long-term care, or assisted living facilities. Too impoverished to take a lyft, not strong enough to endure an overwhelming bus trip.
Or the disabled person can’t attend the meeting because they’re deceased, the ultimate in what happens to disabled people when the world isn’t meeting our needs. By saying I should be able to live below the poverty line, as a person who actually needs extra money for my disabled extra needs, I feel like the government is telling me to die.
I hear that I just need to show up authentically, and I will be accepted. Or that we teach people how we want to be treated, so if I’m treated poorly, it’s my fault. Or I just need to set better boundaries, and then I will not be used or hurt or left out. It’s really not true. In an ideal world, asking for what I need would work.
But it’s a whole-life issue of being disrespected. One or two differences might be tolerated, but once the list gets longer than ten, I’m screwed. If I ask for one special thing, that might be possible. But if I ask for five, I’m just complaining. If I ask for ten, I’m not even believed.
If I set boundaries with someone or otherwise express a need, that’s vulnerable. I risk being misunderstood and attacked. Often I don’t feel strong enough to risk that. Few people hear a need and accept it easily. No matter how careful I am to be fair and clear, I get backlash. I’m seen as attacking someone, by saying I need something different–they think I’m insulting them, and find that unfair and a problem.
In an ideal world, setting of boundaries would be respected, with kindness and love. “Thank you for letting me know–I understand and will work on that,” would be a great response. Or, “Ok, I think I know what you’re asking for. Some time that’s convenient for you, can we talk more about what you need, so I can do better?”
Instead I get responses like:
- You’re overly-sensitive.
- Not everything is about you.
- I’m working so hard–how dare you ask me to work harder?
- You’re asking too much.
- I’m not bending over backwards for you.
- I can’t be perfect for you.
- How dare you say I’m hurting you, after all I’ve done for you?
- Why are you suddenly asking for things?
- Are you off your medication?
- Why do you think you deserve special treatment?
If I ask someone for basic respect, and they tell me, “I won’t walk on eggshells for you,” wow, that’s so painful. That situation has happened to me. My differences were considered unreasonable demands, as she’s the abled white lady with money whose needs actually matter.
ask for help
It reminds me of people who say, “If you’re suffering, ask for help!” When crazy people such as myself ask for help, we can be met with police at our door, shooting us. Sad but true. Involuntary hospitalization is common, and forced medication. Or waiting months for an appointment with a crappy psychiatrist who’s pushing pills, and not being believed about what we say, and told we’re making it up.
If only asking for help worked. If there was a functional system to ask for help from, that would be great. Please create a functional system, and I’ll ask for help every time I need it. Until then, please stop blaming the victim.
Stating my need doesn’t mean my need will be heard, respected, cared about, considered, acknowledged, remembered, or even understood. Most abled people I try to explain a disability to have a short attention span for health complexity. If a disability is common and has a one-word name, there might be a chance of being understood.
But disabilities like to travel in packs, like wolves. And I’ve had extreme things happen to my body that no doctor could find a reason for, let alone diagnose into a commonly recognized disability. Not even people whose job it is, to understand bodies, could understand. So it’s really hard for a random person to understand, then care to accommodate me.
The more complex my needs are, the less chance I have of them being respected and met. There any many ways the process can break down. Even otherwise kind, bright people won’t go there with me.
Backlash is often about power. The other person has more power and doesn’t think they should have to consider my needs. They’d never admit that’s what they’re doing, but I’ve seen it countless times. As a disabled, poor, crazy, fat woman, I’m not assumed to be important, intelligent, or mattering at all. I’m a less-power person.
When someone is a bull in a china shop, breaking my teacups, and they think being a bull is ok, what can I do? How dare I call them a bull–how dare I say they broke my teacups. Or the teacups were not really broken. Or it was my fault, for having breakable teacups.
choosing less harm by hurting myself
It can be dangerous to express my need, because doing that will hurt other people. Often it’s safer to endure violation and hurt myself. Saying what I need and hurting other people, however innocently, can have disastrous consequences. I can lose a job, lose housing, lose relationships, lose my life. When I hurt myself by pushing down my needs, that works better because at least then I can predict the result.
I’m so sad we created a world where stating needs often results in retaliation. I don’t have the energy to handle retaliation. I’ve seen this in workplaces, communities, families, friendships–usually where the power is not equal. The people who are abled, white, straight, cis, non-crazy people with retirement plans are often the ones hurting people like me.
disability is real
Disability is real, not an attitude problem. The world requires things of me I can’t do. Fingers can be pointed in many directions for that: trauma, pollution, abuse of children, the patriarchy, the culture-wide violence that led to my sexual assaults, bad genes–whatever.
The bottom line is–my village didn’t nurture me into a good worker bee who can do 40 hours a week. My health problems preclude full time work. That doesn’t mean I’m a bad person, lazy, asking for too much, and I deserve poverty or death.
People who say disability isn’t real remind me of people who say they don’t see color, race, or ethnicity. People who say, “We’re all one race–the human race!” or “All lives matter,” are usually white people who want to pretend that everyone is like them. That’s way easier than learning about other people.
Please don’t disrespect disabled people. My differences are real. Please greet needs and differences with kindness, willingness to help, or just neutral belief. Abled people’s denial is hell, for people like me.
I’m asking for my basic needs to be met. If my basic needs are different from yours, that’s not an accusation or any kind of personal attack on you.
Thank your lucky stars if your needs are usual and respected. Maybe one day I can live in a world where I’m treated that way too, and everyone understands that disability is real. Doing radical mental health and speaking my truth, I’m trying to create a more-just world that disabled people can thrive in.