It's OK to Have Mixed Feelings About Living With a Disability

Rachel Zakuta
Paintography of a woman with colorful swirls.
Paintography of a woman with colorful swirls.

Hi. I’m disabled.

This past weekend, for the first time I can remember, issues of disability rights made the front page of the New York Times. The story featured the stories of amazing disabled individuals fighting for our rights and scaling new heights of accomplishment. The message was clear: disabled people can do anything abled people can. And I believe in that message — I even wrote a children’s book about it!

The article should have made me feel proud. It did make me feel hopeful for my many brilliant learning disabled and neuroatypical students who were born into this ADA world. But mostly it made me feel ashamed, and ashamed to feel ashamed, because I feel like it’s my job to act like a strong, proud, capable disabled person every minute of every day — different but not less. And I did that job this past weekend, every minute my children were in the room, my parents were across the lawn, and especially in public, when I had to ask a waitress to help me bring takeout I couldn’t carry to the car. But what I was really thinking, as I read the article over my morning tea, was that I had a sink full of dishes, it was going to hurt a lot to do them, and no one was ever going to write a newspaper article about that.

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This isn’t a criticism of that article — it was written, I know, for the able in need of education, and not for me. Also, I don’t want to minimize anyone’s struggles, play who-has-it-worst, or God forbid, reinforce any negative stereotypes. But what about those of us — and you won’t believe how hard it is to even say this in public — who actually can do less, even with reasonable accommodations? Who can’t do everything an abled person can do? Where do we fit in?

I saw a common thread between all the inspiring disabled people mentioned in that article: they can all work a full day. I can’t. I’ve been in constant pain for the last 27 years and 10 months, and when I’ve tried to work full-time, the pain has spiraled so far out of control it has led to mental illness, left me bedridden, gotten me fired for taking too many sick days, or, in the best-case scenario, driven me to quit before any of the previous outcomes could come to pass.

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But I should be proud, right? I should mingle with all my nondisabled women friends who manage to have a career, raise children, maintain a healthy relationship, do the excruciating housework or afford someone else to do it, and feel proud of…surviving? Surviving mostly sane? I can’t be the only disabled person to ever feel ashamed for having done less with their lives than others, can I?

I’ve encountered my share of microaggressions, phones slammed after affirmations that we “don’t believe in special treatment,” and even friends-of-friends telling me disabled people should be left to starve in the street so they don’t pass on their genes. But honestly, these experiences seem few and far between compared with the daily struggle to swim through the pain and simply live with my disability. I’m at the older edge of the ADA generation, especially considering that I didn’t become disabled until the age of 17, so I’ve received my full quota of positive messaging, encouraging mentoring, and hallway space papered with photos of the famous and disabled. I know I’m supposed to be proud and confident and not let my disability limit my dreams. I’ve been told many, many times.

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Here’s what I’ve never been told — and here’s where I stop talking to the abled among you and talk to the people out there like me.

It’s OK to feel ashamed.

Oh, I’m not recommending it as a lifestyle choice, a mentally healthy habit, or even a rational thought. But occasionally — say, one day a year — it’s OK to admit that you have actually done less than you could have if you weren’t disabled, and to bitterly resent that fact. It’s OK, one day a year, to be extremely jealous of the people around you who are able to spend a whole nine hours at work, even though intellectually you know that everyone’s life contains some heartbreak, and you probably just aren’t seeing theirs. It’s OK to take some small amount of time on your own to feel angry or self-pitying but definitely negatively about your disability, in between all the time you spend proving to everyone that you can handle your condition just fine and you’ve learned very valuable life lessons from it, too. Then you can go back to pretending you aren’t in pain so you don’t make anyone feel bad.

Possibly, if I’d listened to my mother 27 years ago and joined a support group, someone might have said these things to me. But I didn’t, and no one ever has.

I wonder, do the “inspiring disabled” feel these things, too? Have they done enough to be proud all the time, truly deep down? Or is there no such thing as enough? As a friend recently pointed out, there are other cultures that open typical conversations with new acquaintances with different questions, such as, “Where are you from?” Each question has its own assumptions and baggage, of course, but it’s telling that we say, “What do you do?” Do you achieve enough of significance? Or shall I dismiss you out of hand?

OK, abled people, come back and listen up — this part is for everyone. Yes, we need to see the rights granted in the ADA actually enforced and made present in the real world — and expand them. Yes, we need to address the kind of prejudice that makes it impossible to disclose one’s disability before receiving a job offer. Yet we also need to uncouple the concepts of what we can do and what we can be, inside our own brains. A person’s value is not determined by how much money they can make. A person’s contribution to their family and community is not measured by how many productive hours they can log. And dreams take as long as they take.

So, I’m not a famous, talented, successful disabled person. I can do less than you. But I’m still worth just as much.

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