I’m Broken and It’s Beautiful

Japanese pot on a wicker repaired using Kintsugi technique with gold joining the broken black pieces together Image By Gugger— Own work, CC BY-SA 4.0, https://commons.wikimedia.org/wiki/File:Kintsugi.jpg

A new anthem for disability rights

I’m in Canada for the summer. The Maritimes, not one of the big population centres (the largest city in the entire province of New Brunswick is the size of Sunnyvale California, and I’m not in the largest city). The choices on the radio in my loaner car are:

  1. Country (English and French, I don’t speak great French)
  2. CBC (basically the content equivalent of NPR for my American friends)
  3. Top 40

I don’t listen to the radio much, and I hate country music. Because my car is in the shop the radio presets were someone else’s, and the #1 radio button was set to a top 40 station. When this song started playing, I literally had to pull over and sob. I haven’t done that for a long time.

Every stanza of this song has meaning to someone with a long standing disability. People who have accepted their disabilities, who own them and have integrated them as an important part of who they are, who are PROUD to say “I am disabled.” People who have no problem bringing their authentic disabled selves to what they do EVERY SINGLE DAY, regardless of how visible the disability is. People who when they dream about themselves, the dreams include their disability in an incidental matter-of-a-fact way, not in a “OMG is this ever going to get better?” way. People who have (as someone described me recently) “run out of effs to give about excuses for why something isn’t accessible.”

I never held my hand out
And asked for something free
I got pride, I could roll out
For miles in front of me
I don’t need your help
And I don’t need sympathy
I don’t need you to lower the bar for me

Most people with disabilities (at least the ones I know) despise asking for help and only do it when there are no other options. Lowered expectations of people with disabilities is an enormous problem. Lowered expectations are a form of discrimination, no matter how unintentional. Theyresult in the person with a disability believing that they are less capable than a person without a disability. This discrimination, generally dished out by someone close to the disabled individual, is crippling to self-esteem and ends up being a self-fulfilling prophesy.

I’m phenomenal and I’m enough
I don’t need you to tell me who to be

Someone in China who is blind recently told me “I became a software engineer because I didn’t want to be a masseuse or a piano tuner” I’m not one of those people who advocate telling children with disabilities “you can be anything you want to be.” I believe that’s a myth that creates trust issues when the child finds out it just isn’t true. But I do strongly believe that people without disabilities should not narrow disabled people’s options to what the non-disabled person thinks the disabled person is capable of. There are a wide variety of choices for an even wider variety of disabilities. And let people with disabilities make their own decisions for crying out loud? Condescending kindness is the opposite of dignity and respect.

Don’t fix me
Don’t try to change a thing

I’ve had 24 surgeries and spent decades tinkering with different medications, therapy, braces, and devices. I’m less excited than I used to be about trying the “next great thing”, and I’m still waiting for the cure for Type 1 Diabetes that I was told would be in 5–10 years from my diagnosis almost 20 years ago. In accepting my disabilities and integrating them into my personality, I no longer view my limitations as something that need to be fixed, just annoyances that have to be worked around. “Have you tried essential oils?” is NOT a good way to start a conversation with me, for the record.

We walking on the ocean
Turning water into wine
We bury our emotion
And pretend that we’re just fine

When you have a long-term disability, sometimes the miracle is getting up and going to work, or getting a meal made. If I had a nickel for every time I said I was fine when I wasn’t, I could retire. Sometimes the truth is just too hard to explain. Sometimes you aren’t close enough to the person you are speaking with to let them in. This is the only place where I am occasionally guilty of not bringing my “authentic self’ to everything I do. Rates of clinical depression in people with disabilities are literally astronomical.

Studies have shown that symptoms of depression may be 2 to 10 times more common in individuals with disabilities or chronic illnesses, and depression is one of the most common “secondary conditions” associated with disability and chronic illness.

Many people with disabilities think of the depression associated with the disabilities as just yet another medical issue that they don’t want to have to deal with. A weakness that a “super crip” wouldn’t fall victim too. I frequently say that if it isn’t going to kill me, I don’t have the energy to deal with it. Depression, for now, falls into that category.

I’m tired
Can I just be tired?
Without piling on all sad and scared and out of time
I’m wild
Can I just be wild?
Without feeling like I’m failing and I’m losing my mind

I honestly don’t know any single person with any level of disability who isn’t tired.

  • Sometimes the disability itself makes us tired
  • Sometimes *compensating* for the disability makes us tired
  • Sometimes dealing with the daily BS from people who don’t understand the disabilities we are experiencing makes us tired

Don’t even get me started on being the disabled parent of a disabled child. Kudos to every parent of a child with Type 1 Diabetes, Asperger’s/Autism, ADHD, dyslexia, hearing loss, or any other type of disability.

  • You never get enough sleep
  • There are never EVER enough hours in the day (or enough sources of funding) for all the appointments, treatment, devices, etc. you want your child to have access to.
  • When something needs to give, most of us sacrifice our own well being first, before ever canceling anything that might help our children. I know a lot of parents of children with disabilities, and none of them ever “put their own mask first”. It just doesn’t apply to these circumstances.

I hate how much I have to sleep, but I know what it takes to keep me functioning. Right now, being functional is more important than activities that I’m sleeping through. Planning frequently goes out the window when you are disabled. You just aren’t always capable of saying “Sure, I know I’m going to be feeling well enough a week from now at 7 pm to go out to dinner with 8 other people”. Spontaneity without feeling guilty about it is the name of the game.

. . .

Thank you Kelly Clarkson. I should listen to top 40 more often. This is my new theme song.

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