I don’t look like I have disabilities.
Sure, I’m deaf, but I wear powerful hearing aids and I’m a ninja at lipreading.
I speak clearly, I have no deaf accent.
I don’t go out when I’m in full throes with C-PTSD, no-one ever sees me when I’m in the agony of dealing with triggers or the spirals of extreme depression.
I have scars all over my face, yes, but I am attractive enough by mainstream standards that I can forget they are there and I don’t deal with people being callous about any of it. I was called a lot of names in elementary school, but in adult hood, my scars have been more a hallmark of sexy than not (don’t ask me why; I think it’s strange and slightly kinky too).
I mean, I can pass as non-disabled because my disabilities are not immediately visible.
With discrimination for people with disabilities being sky-high, with stereotypes and prejudice abound, there really is no incentive to “come out” as disabled, is there? And let’s be clear about the fact that I have a choice; I don’t really have to “come out” as disabled; I could stay in my able-bodied closet and pretend that’s the group I belong to.
I am rewarded in that closet, after all: I’m doing what mainstream culture tells me I should when I stay in there.
Here are the reasons why I came out as disabled, and why I keep on coming out and talking about this.
Lying is Exhausting
I wanted this to be some noble truth, and I kept circling around for a more profound way to say it, but in the end, one truth is simply that lying is exhausting.
I was so tired of hiding my hearing aids. I was tired of hair spraying all of my hair around them just. so. and freaking out about whether or not people could see them. I was tired of pretending I was fascinated with what people were saying, as opposed to merely trying to figure out what they were saying by dint of lip reading.
I was tired of slipping into the bathroom to change my hearing aid batteries, tired of bending myself over backwards to try and figure out conversations in loud restaurants, tired of going to movies where I couldn’t understand much. Tired of doing quick turns when I’d slip and misunderstand what someone said, tired of looking stupid because I responded inappropriately.
And that’s just the deaf stuff.
For my TBI (Traumatic Brain Injury), I was tired of trying to stay in fluorescence lighting that would trigger my brain, tired of fighting through the memory lapses and fatigue. I was tired of making it all seem like it was no big deal when it was really a Huge Freaking Deal and it took tremendous amounts of energy to keep everything together without explaining any of it or just being open about all the accommodations and tools I was using – or needed – for myself.
My C-PTSD (Complex Post Traumatic Stress Disorder) was perhaps the most complicated, and it was not clear until just last year that I actually have C-PTSD and not bi-polar disorder. While my quest to stay even-keeled and balanced is daily and consuming, I still rarely talk much about this. Up until recently, living with C-PTSD has been an “in the trenches” experience and I need to be at least crawling out of the trenches before I can talk about it.
Back to lying being exhausting.
It is: it’s tiring and I find it a lot less stressful to just be honest and open about things.
2. Connecting is Powerful
I can’t describe the deliciousness of the experience of being around people like yourself when you once thought you were all alone.
It’s not just the Hedwigs, the Misfits, the Aretha’s, the Patti’s, and the Yoko’s; it’s the people who know exactly what it’s like to be judged because of what someone else thought their body or brain could or couldn’t do.
It’s people who know what it’s like to not be hired – or to be fired – from jobs because of who you physically are. It’s people who understand the pain of crushing your head against glass ceilings, the anger at being told to fit into a box that was never made for you.
It’s people who can do your ninja-tricks too (like lip reading that conversation in the corner), and being able to laugh together at humiliating ablest stuff, people who can catch you – or you them – as you fall into a trigger.
The connections that I have made with these people mean the world to me: I am not alone, I was never alone.
3. Community Power & Expansion
Our disability community needs voices, people, energy, power, all of it, all of us.
We need people with visible disabilities and non-visible, and the more of us that are talking and stimulating conversation and provoking thought out there, the more likely we are to affect some real social change.
I also feel like there is power in every corner: I am able to reach a particular group of people by the way I talk and write – because I’m deaf, because I have TBI and C-PTSD, because I mother a child with Down syndrome, and because I look the way I look, and have the kind of life I do.
We all count in this energetic call to shift access, inclusion and acceptance for all of us with disabilities – since I also count and my voice also matters, I use it.
4. The Future Generation
I don’t want any child to go through what I did.
Feelings of worthlessness, the depression, the cutting, the self-loathing. The feelings of stupidity (- because I couldn’t hear; which triggered more of the cycles of worthlessness, self-loathing, self-harm).
And I was sexually and mentally abused. Abuse is all too typical for kids with disabilities, who count among the most vulnerable. Long time readers of my blog know that it was primarily because of my own experiences with being sexually abused that I hesitated in choosing to have my daughter.
The more that I can talk about this things and put this information out there for other parents of deaf and disabled kids, the better off some kids might be.
The more that I can reach out and connect with other deaf kids, teenagers, adults and help with resources how-to’s, the easier things might be for some people. That means everything to me.
“I didn’t know you were deaf!”
I can’t even count the number of times I’ve had that said to me, or people just not knowing to grapple with the concept of someone who can speak clearly but can’t hear (I know! It’s weird!).
Added to that, I’m still learning ASL! None of us who are deaf were born knowing it, and I only started learning it in my mid-thirties. It’s nuts that I speak Japanese waaaaaaaay better than I speak ASL, but there you go. Life being a box of chocolates again.
I went to the Big Island Deaf Club meeting last weekend with my kids.
I took out my hearing aids and relaxed into the knowing that I’d be fine without them. I don’t think anyone except another deaf person really understands how stressful it can be to try and figure out what things are being said or what is going on all the time.
This is the most amazing experience, it’s the biggest spiritual sigh, ever. To just relax into everything being just fine when the sound of the world is turned off. It gives me the juice and the mojo to keep on with this blog, with digging up resources, with the caring and connecting and community-building.
It gives me the strength to keep on coming out, because I can’t connect with my people unless and until I do.