Words for Someone Newly Diagnosed

newly diagnosed - Michaelmantz3

So, what would I say to someone newly diagnosed (with any disability, not just ataxia)?

Surround yourself with other disabled people.

I am speaking here as someone who got diagnosed with a degenerative physical disability in young adulthood. Who had spent her whole life up until then as an able-bodied person. Or at least thinking she was, not knowing about the ticking time bomb in her cerebellum). So I guess my advice is more for people like me. Who has had to become disabled at a time when their life was just about to get started for real.

Chances are, at that moment in your life, you’ll be surrounded by a majority of other able-bodied people. People like family, friends, doctors…

First of all, your diagnosis will act as a friendship litmus test of a sort. Some friends might drop you, or you might drop them, because of ableism. For me, it was a “friend” who had spent years nicknaming me “wobbly” (because of how I walked) pre-diagnosis. The day I fell down when he ran into me accidentally. And he just laughed rather than help me get up. Or to even ask if I was all right, was the last time I voluntarily talked to him.

Hopefully, though, the majority of your close ones will still love you, support you, help you, and be there for you. For a time, that might be all you need: someone to commiserate with about how much this sucks.

The problem is, no matter how much these people love you if they’re not disabled themselves, they’ll never be able to relate to you.

They’ll try, but they’ll never know what it’s like to have body parts that don’t work the way they should. To look outside and see ableism everywhere, to be disabled. Because they’re not living it.

My advice for newcomers to the disability community is to connect with other people in the disability community. Not necessarily in real life, but the Internet is a bright and shiny place. That allows you to get in touch with anyone anywhere. This is how I now know disabled people here in Canada, in the US, the UK, Europe… On Twitter, where I am, the #DisabilityTwitter hashtag is always a great place to start.

So what did I find in this online community that I can’t find with my able-bodied IRL friends and family?

  • Nobody Judging Me

People in the online disability community usually have an easier time relating to your disability-related issues than someone who has never even remotely experienced anything of the kind. Without sharing your disability or your specific problem, they can empathize in a way non-disabled people can’t, as much as they can try to. Whether you talk about being exhausted after a shower, falling over while filling your cat’s food bowl, or dropping your phone again in a place where you can’t easily bend over to pick it up, disabled people have probably already experienced the same thing, or something similar. They’ll understand which situations call for sympathy and which call for laughter (I mean, the food bowl thing was pretty funny…)

One specific situation that often gets pointed out is when physically disabled people get mobility aids.

Non-disabled people usually respond with pity because they see disability as bad, as something to be avoided, and the use of a walker, crutches, or a wheelchair, as a failure. Disabled people, on the other hand, will congratulate you on your new aid, because they see it, rightly so, as a key to freedom.

Case in point: I got my walker in 2016, well before I became a regular Twitter user, and got to know disabled people my age. All I’d seen before were elderly people with walkers, I had no clue about the community of disabled people from my generation using and loving mobility aids. So I cried and struggled and resisted until I didn’t have a choice, and then I berated myself for not having done so earlier because my life was so much better and easier now. Today, I’m at the point where I need a wheelchair, not all the time, but for instance when I go outside. And this time, having seen photos, videos, and read accounts of other disabled Millenials who love their wheelchairs, I can’t wait to get one of my own.

What has that brought me, personally?

I have stopped expecting myself to still function like I did when I was 18 and non-disabled. Often, I’ll need to take short naps in the middle of the day for no reason. Sometimes I’ll have little accidents when going to the bathroom because I can’t run. And then sometimes I’ll fall down while doing nothing but standing still. And that’s all fine. I stopped judging myself by non-disabled standards because I’m no longer non-disabled.

  • Answers to Questions

Sometimes, disability or chronic illness brings up very random symptoms that we don’t quite know what to do with. My shoulder is making a weird sound, is this normal? I have [this disease], take [this medication], and keep having nausea, is it a known side effect? Every time I [do this], [this] happens, should it?

You could ask a doctor. But let’s face it, it would take ages to get an appointment and maybe cost money. And they’d just tell you to lose weight or be less anxious or something equally unhelpful.

What you should do is ask the online disability community.

On Twitter, tag #DisabilityTwitter and/or #NEISVoid (“no end in sight”), and chances are you’ll find someone who’s had that exact experience before and can help you so much more than anyone with an MD but no experience of disability can.

  • No Internalized Ableism Anywhere

A few years ago, I tried joining a Facebook group of ataxians. I found many people with the disease, but most of them were middle-aged, having been diagnosed a few years ago, late in their adulthood. I did not find anybody like me, diagnosed young (22), looking at an entire life of disability, not just a slightly more complicated retirement.

As you can see on page 7 of this article, spinocerebellar ataxia (the one I have) rarely becomes known early in life. Of the twenty types counted, only one has an onset in childhood; all the others start, on average, in the fourth decade or later. Most of the ranges even go deep into the fifties, sixties, or even further. These people grow up able-bodied, and live their whole lives comfortably in a world that was built for them, before reaching retirement age and being told, “Oop, you’re disabled now!” Is it a big surprise, then, that internalized ableism was rampant in that group?

Most of the posts were about people complaining about what their life had become, about pain and cost and loss of independence.

These are absolutely things to complain about, don’t get me wrong, but not to the exclusion of everything else. Every question, update, and comment, was met with hugs and pity and the annoying “care” Facebook reaction. Lots of members balked at calling themselves disabled. And fully embraced the cutesy terms ableds invent to talk about us. Openly talked about their “special needs” or lamented how they were now “wheelchair-bound.”

Some newly diagnosed people may need this kind of support and find worthwhile help in this type of community; I’m not judging, you do you. But the discourse I found there among older disabled people made me uncomfortable. See, my three living grandparents are currently 93, 96, and 100 years old. If I somehow inherited their longevity genes and am doomed to live another five or six decades with this disease, I don’t intend to do it feeling sorry for myself.

So back to Twitter, I went.

On that platform, ataxians are few and far between, but support is everywhere. I learned that it was okay. To love my broken body, to laugh at myself, and to accept what I can’t do. Be proud of what I learned to do instead to make up for it. In other words, other disabled people taught me to wear my disability proudly.

As always, everyone needs something different. What works for me might not work for you. Different communities, and different people, have different vibes, both online and offline. I will simply urge you to try different places until you find one in which you’re comfortable enough to be yourself.

  • Awareness of Other Disabilities

If you stay surrounded by non-disabled people, all you’ll know of the disability world is what relates to your own specific situation. Being acquainted with people with diverse disabilities (illnesses, diseases, what have you) opens you up to new horizons you would never know about otherwise.

When I was younger and not disabled yet, I never spared a thought to disability issues.

Blocked sidewalks, steps to enter stores, broken curb cuts? These things didn’t bother me, so I didn’t even notice them. But now they do, so I do. I also realize that my disability and my way of navigating the world aren’t the only ones out there, and that accessibility can mean a lot of different things. I’ve learned about the existence and importance of adding alt-text to photos online for the benefit of people using screen readers, so now I never upload an image without it. Before, I didn’t know, so I didn’t care. And now I ask everyone I work with, and everyone reading this, to please know and care too.

On Twitter, I don’t follow only people with ataxia (luckily; if I did, I’d be following two people…). I follow Blind people, Deaf people, and people who have been disabled since birth. And others from an accident later in life, and people with different chronic illnesses, chronic pain, and mental disabilities. People from different countries, different ancestries. Some work full-time, some not at all, others somewhere in between. And I learn so much from all that diverse community every day. Even if you’re able-bodied, you can too. Disabled people are not the only ones able and allowed to learn from people in their community.

Keeping Up With the Discourse

  • Disability issues and stories about our community are often put aside in the news cycle. Added as an afterthought, a footnote, or ignored altogether. Word of mouth is often what brings these things to light, and where better to find this outlet of news touching disabled people than in a community of disabled people?
  • Whether it’s a new discriminatory law passed somewhere or a movie coming out starring a disabled actor, a disgustingly ableist article in a national newspaper, or a town committing to adding accessibility infrastructure, we hear about all this and more only if we’re in the right circles. And those circles are usually not made of non-disabled people.
  • This isn’t to say we all have to have the same opinion all the time. Be offended as a group or not at all. Just because we all share the characteristic of being disabled doesn’t mean we become a monolith. We are still individual people with our own thoughts and opinions. Just because *the community* thinks a certain way doesn’t mean we can’t disagree. But it’s still nice to have a place to go to keep up to date on how disability is going. What the current stories are, what to get mad at (or not) today, what to protest, and who to yell at.

In conclusion, if you’re newly diagnosed, welcome to the disability community. You’re one of us now! Feel free to stalk, read, interact, write, ask questions, give opinions, whatever you feel comfortable with. Blogs, social media, we’re everywhere!

Share your thoughts and/or comments and join our community today.  A place where we empower you to build a healthy lifestyle and raise overdue Ataxia Awareness.  Experience transformative storytelling and share your story for inspiring positive change.

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