Working, Access, Disability, Inclusion, and Internalized Ableism

When I’m not working with the public, I start telling myself this story inside my head about how I’m “disabled, but not really disabled, you know?” Right, that story. Internalized ableism rears its ugly head again.

And then, just as I’ve gotten myself talked into the notion that “the last 20-something years of living on SSI have just been a sweet scam and how on earth was it so easy to get on that, anyway?” … then I try working again.

Like right now.

A happy confluence allowed me to start driving Uber in the town where I was hiding from winter weather. My car is new enough and in good enough shape, I have a smart phone (although Uber will get you a smart phone, they are that desperate for drivers), I love to drive (I mean I love to drive the way Clay Marzo loves to surf. I have put over 22,000 miles on my car in the last year. I really, really love to drive. It soothes me.)

So I’m all, “I can linger here and pay down my debt as I drive Uber. What magnificence.” And the first week was really great, because I was stoked enough to drive several 8 hour shifts in my first week, which was also a really busy week because I drove my first day on St. Patrick’s Day.

The fact that I survived a three-day drinking holiday in a college town fueled those thoughts I always carry around with me about how I could really work, all the time, every day, and be awesome and stalwart and stoic and shoulder to the wheel because I’m “disabled, but not really disabled, you know?”

And then reality hit. It got harder and harder to go to work and stay at work. If this were a job for someone else, I’d be fired by now and it’s only been three weeks. The only reason I am still capable of driving Uber is that I have no set hours and can turn my cab on and off as much as I need. Even with that, I hit a situation last week where I ended up needing to put some unruly people out of my car and work got even harder afterwards.

Just like Clay Marzo can surf all day long but can’t handle the people-aspects of competition surfing, I can drive like nobody’s business (“I’m an excellent driver.” – Rainman) but can’t handle the people-aspects of driving a ridesharing/cab service.

I’m still driving. For now.  I need to pay down some debt I’ve amassed that’s got me painted into a financial corner at the moment. And since it turns out that I have to stay in town to fight to get health coverage, it makes sense to keep driving for a while, as I can, keeping a close eye on my total income to keep from losing my disability benefits (though they’re not currently in danger, my income is turning out to be so slow.)

I have to protect my SSI because it’s so clear now that I could not survive on working for a living — my income from Uber quickly sank to a point lower than what I’m recieving on disability (which, itself, is 20% below the poverty threshold.) I’m pulling down about a quarter what I did that first week, even though business is every bit as steady as that first weekend. Uber can’t keep enough drivers, so I’m constantly on two runs at once all night long. There is more work out there than I could do. But I am still unable to sustainably support myself by working.

Thing is, I find my endurance waning. If all I did all night was drive around where my gps tells me, I could work the legal limit of 12 hours a day, no problem.

But I am driving *people* around. And that means interacting with people. And it sometimes means grappling with conflict. And it’s really hard. And draining. And did I mention hard? Hard and draining.

I know everyone’s work is hard and draining. But I’ve also watched what everyone else can sustain long term and compared it to what I can do when I’m trying so hard I make myself ill. This is how I figured out that I’m among that group of people for whom work, if even possible, is far more hard and draining than work is for abled people.

I’ve often thought the ideal job for me might be forest ranger on permanent fire watch. Or maybe lighthouse keeper. Or that guy who gets left behind on Mars. You know, pretty much any job that doesn’t include humans other than just me. Me and some work to be done sounds like a really satisfying day. Me plus other humans and some work to be done? Rarely ends well.

And the working world is so unfair, because I am the one who has to pay the price for the access lack and I am the one who gets blamed for access fail because everything’s on my shoulders all the time.

Oh, and I’m starting to remember that I actually *am* that disabled and there’s no shame in it; it is what it is. And it’s not about trying harder, because I’m already trying harder than anyone should ever be required to. It’s about access and the lack thereof. And about not letting internalized ableism drown me under a false belief that I am and should always be the only person 100% in control of and the sole provider of my own access needs with no help or accommodation from anyone else.

There’s still a lot of work ahead of us activists and advocates if we are to carve out a world with true inclusion. It sucks how much work we have to do. Ever has it always been for those who hack through the wilderness with machetes. The work is hard and the rewards often come after the workers can no longer reap the benefits of their labor.

But we are shaping the future — or trying to, anyway — and there is an intangible, intrinsic reward to being a builder, a fighter, a gadfly. We are biting through, every day, piercing holes to let the light in. Whether shoulder to the wheel or struggling to avoid slipping beneath it, we keep working for forward momentum, gaining more ground, a millimeter at a time if that’s all we can get for now.

No, I’m not very good at working for or with others. I want to work. I love to work. But this world still leaves only narrow gaps for people like me to try to slip into if we can. I can drive. I can write. I have a good memory and a thirst for learning. I have many skills, valuable skills.

And I have a massive, rarely-met bundle of access needs that have stood as barriers between me and what I could earn for myself in life with those skills (and there’s more than just money I could earn in life if I had the right tools. So much more) all of my life.

In adolescence, I wanted to be a veterinarian. Or a neurosurgeon. There is little doubt I would have gone into some medical field or another if I’d had autistic-understanding mentorship in my youth. And an autistic-accepting working world to enter into.

So many other Autistics are in similar situations or growing up toward them. We are biting through but we need to keep biting and bite harder because we are still so far away from inclusion. We haven’t even begun to leave teeth marks yet.

We need a world where people aren’t excluded for moving differently or for communicating in different ways. We need a world where people understand that fulfilling access needs requires more than ramps and sign interpreters and Braille. Yes, of course we need more ramps and ASL and Braille and captions and curb cuts and so many other important access aids.

But for those of us seeking accommodation for neurodivergence (as well as those with chronic conditions, invisible disabilities, relapsing-remitting conditions that dramatically change in day to day access needs) access hasn’t even begun.

We’re early in this battle. It’s hard. We have to keep biting, biting, biting through. In the poetry of Laura Hershey, we all need to “remember, you weren’t the one / Who made you ashamed, / But you are the one / Who can make you proud.” (You Get Proud by Practicing)

We need to practice until we find enough pride to seek co-operation from others in getting our access needs met together. We need enough pride to own our needs and feel okay about getting them met and we need to shape a culture where access needs are respected and human beings — in all our variety — are valued.

I’m doing better with work than I ever have before, but still not well enough to support myself. In the process, I have gained further insight and increased clarity about myself. I have grown in compassion toward myself and practiced being proud. I have noted, yet again, some of the inequities that come with disability. And I have a renewed commitment to doing what I can to help roll the movement forward, pushing on for a better world, stacking hope upon hope in a collaborative effort to build a future where all are valued and supported instead of neglected and rejected.

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14 responses to this post.

  1. Good points very well thought out and crafted post

  2. Thank you for writing this honest post. I commend you for trying to work and recognize the strength required to say why you need to evaluate whether or not it is right for you. The insight and knowledge you gained through this process will benefit many if you continue to advocate.

  3. Posted by sunny on April 11, 2016 at 8:04 am

    Hello. I just read your new post. It sounds to me like you are going through a hard time. My name is Sunny and I am totally blind and autistic. I worked in a sheltered workshop for eight years. I just started a new program called Self directed services.
    I know what it is like to experience internalized ableism. I have experienced that many times. April is autism acceptance month, and I believe that people should make this world more accessible for those of us on the spectrum. I’m sorry that you have to go through such a stressful time at work. I hope things turn out better for you. I hope that people will be understanding of your situation. Please continue to advocate for neurodiversity in everything you say and do.

    Sunny

  4. Posted by Aleda on April 11, 2016 at 1:13 pm

    Wow, I really needed this today! Me too, I’ve held numerous jobs, some for years, but it was so hard. Of course, not having any idea I was autistic didn’t help; I was lazy, not paying attention, not trying hard enough, and just needed to suck it up!
    So thanks for speaking to me and for me, from one ‘coulda been a vet’ to another. ☺

  5. Hi,

    I publish an Australian website on disability news and opinion at:
    https://mydisabilitymatters.com.au

    and was wondering if it might be okay to republish this article and any other relevant ones on our website, with appropriate credit and a link back of course.

    It would help spread your work and gain a wider audience for you.

    Hope we can work together and I am quite happy to publish other articles you may have written that aren’t on your blog also.

    Thanks,
    Dale.

    • Dale, I will look at your site, butI should warn you that poor treatment from The Mighty has made many of us loathe to allow re-publishing “for the exposure.”

    • Dale,

      Thank you for the offer. Right now, many of us are quite hesitant to release our work “for the exposure,” thanks to abusive practices of other online publications. I will have a look at your site all the same and, depending on what I find there, I will at minimum share it with readers.

  6. Hi Sparrow. Apologies if I’ve misjudged your existing reach, but I’ve nominated you for a Liebster Award. As a recently-identified autistic, your insights on autism and its place in the wider disability context have been really helpful to me. If you would like to take this up, please visit my post at Elephants Remember, answer the questions and pass it on! Thanks. Ele.

    • My reach varies. Right now, when I’ve been sporadic about writing, I get about 800 visitors a day. During times when I have been writing more steadily, my visitors go up to around 10,000. Then, when I am not doing well and posting much less often, my stats drop back down to a trickle again, like now.

      I’ll have a look – thanks for thinking of me.

  7. Posted by Jess on April 21, 2016 at 9:53 am

    This post really resonated with me. I have had a lot of trouble working in the past, especially when I need to communicate a lot. I just can’t do it properly, and when I try to explain what I’m saying (because I get muddled and mix up words) most people seem uncomfortable or angry at me for being so thorough about it. I can’t help it, I’m a hopeless over-explainer. Either that, or I am silent. Too many mishaps otherwise.

    I was a shift manager at Gamestop for 2 years, but it was killing me. I lost 20 lbs from the stress (I had been the same weight since I stopped growing). Though my manager would have trained me as his assistant manager if I wanted, so I know I wasn’t bad at the job (happily for me, he was a huge grouch and hated customers but treated his employees pretty well, he wouldn’t let them attack us like some managers do) I just couldn’t handle the constant performing anymore. And being a female employee at a game store added extra stress to that. I would put myself through the ringer, because another girl I worked with was a shift manager, went to school full-time and was handling everything better than I was handling that one job.

    Right now I am a part time package handler in the early morning hours at FedEx. I really really recommend this to people at their wits end if you don’t mind physical stuff or having a weird schedule. Fedex, not UPS. I worked for both and UPS takes advantage, imo… Fedex has full benefits after 90 days for PT employees, paid time off, and a really thorough HR dept. There are also opportunities to move up, they only promote from within. Obviously each place will be different, but where I am… people don’t bother you too much if you do your work and don’t wanna be bothered. There are a lot of misfits and “weird” people there. Once you learn how to do everything, it is fairly routine and not too stressful. Just thought I would throw that out there for anyone feeling desperate and without formal education… so far it has been the only job I have had that I can tolerate. Retail is just not possible for me anymore. I, too, think about what I could have done had I had some sort of mentor. An apprenticeship sounds like a dream. Jane Goodall was always my hero, and I have always wanted to be in conservation. Thanks for the place to ramble on, and thanks for posting this. I have been having such similar thoughts lately about working more than I do.

  8. Thank you. Work and I had the difficult how do we accommodate your needs talk this week. Brain waited to cry with dignity until I was alone again.

  9. I totally get this. I am self-employed these days to avoid the pressures of having to conform in a neuro-typical work environment. But whereas it seems many self-employed people work long hours to make their businesses work, I work a fraction of the time and unfortunately my income reflects this.

  10. Boy, can I ever relate. I like my job,just not the people aspects of it. I love to work…it makes me feel productive, but it also drains me beyond measure most of the time. It’s an internal war that I wage every day I’m at work. I made a very similar post before I read yours, but yours articulates the situation much more clearly.

  11. Thank you. I needed that. I’m sorry you weren’t able to work long enough to get Soc Sec Disability and a better income. You’re strong enough, you do enough, by sharing your thoughts and feelings, especially. It really helps those of us who keep trying, too hard, to get back into the world of work and earn a living, again. People think we like this. Disability actually depressed me so badly, at the start especially, that I felt like a loser for needing help to just survive. I know the finances really push us to drive ourselves into illness and relapses, it’s a terrible choice to have to make. I hope you keep writing, and feel safe enough sharing it so you can earn some money doing it. My grandson has autism, and I want his life to be kinder, with more acceptance and support than we have now. I want all of us who struggle just to make eye contact and hold a conversation, to finally just be accepted, as we are. You’re helping us get there.

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