Saturday, February 16, 2019

Disability Is Hard: On Giving Ourselves Permission to Name Our Pain

I’m going to throw it out there—something that almost feels impermissible as it rolls off my tongue, clacks on my keyboard…

disability is hard.

There, I said it. 

That is not an invitation for others to assume that my life is worthless, to assume that “disabled” is a bad word, or to assume that I think I need to be “fixed.” I have said many times over that I am proud to be disabled and I’m not lying. My disabled identity has infused perspective in my life that shores up my being as much as my bones. The people and experiences given to me because of my disability are sacred. But in the ongoing battle to have the non-disabled world recognize our value, and to recognize that so many of our obstacles are man-made, we disabled folks often deny ourselves (and others) the right to communicate our struggles. 

Yes, even the most disability positive people are allowed to have moments and days when having a disability…well…doesn’t feel awesome. 

By the time you have reached this sentence, some of you will have branded me with one of those dreaded adjectives: ableist, self-loathing, bitter. Maybe you will even call me the reason why so many non-disabled people see us as pity objects and not as whole people. But I am a whole person and that is why I am writing my whole truth. 

I am at peace with my body. Its remarkable ability to adapt, to find its own way of doing things often leaves me in awe. I don’t want to hide my surgical scars. I am fond of the way my left hand fingers fan slightly off to the side.  My strange circuitry, the overzealous puppeteer of my muscles, is beautiful in its own way. But it is OK too, to lament that my joints ache far more than they should at age 26. 

I am allowed to wish that my hip would just cooperate, to wonder what the jaunty movements of my non-disabled peers might feel like. To believe firmly in the disability rights movement and the fight for accessibility and also, to long some mornings, for the ease of popping nonchalantly into an inconspicuous non-adapted car. And oh, would it be grand sometimes to take an easy shower that felt like a quick task and not an event. 

Of course I have moments of envy towards people who can dress and shave and wipe their butts without the gaze of 4234652 gloved attendants. I often want to scream at those people… what does real privacy feel like?

 Is it carefree as it seems to pass by a nursing home in your 20s and not feel like it’s just a lucky break that you don’t live there? 

What is it like for your bones to have a youth?

I am every bit the person I was meant to be and every bit grateful for that. But it shouldn’t feel forbidden to have “bad disability days” or to wring my hands occasionally and say, “This just sucks.” 

Because disability is good and bad, easy and hard, ugly and beautiful…so much like life itself. And we owe each other, as disabled folks, the space and grace to say so without judgment. Similarly, our non-disabled peers owe us the chance to acknowledge moments of pain without dismissing our lives as wholly terrible.

I love my disabled self. But it is not a perfect love. It’s a love that needs work. That’s big and real and brave, but also cracked and wounded. That feels shameful to say, but one day it won’t.

I am learning.


  1. This is Christina Faria. So glad to have inspired you to write this. It desperately needed to be said. You are so much better at words then I am. Thank you for being brave enough to put this out there.

  2. I cannot relate with physical disability personally, for my biggest obstacle is my depression and I see the similarity in how it's not feasible to have real conversations about our limitations and issues. Thank you for this perspective as well, one bbn of my goals at school is to better help advocate for individuals with disabilities both visible and invisible, and hearing others voices is vital to that.

  3. This is well said -22 yr old girl in a blue wheelchair ��

  4. All I can say is thank you for saying what everyone is scared to. I love you for that x

  5. All I can say is thank you for saying what people are scared to Thank you I love you 😘

  6. I am very determined that pain—of every variety—be an open element as we confront our lives. For too long, all we've been allowed is pride. There's so much more as we try to survive. Keep your honesty alive. Riva

  7. I thoroughly love this. Thank you for de-stigmatizing struggle. We have to find a way to be real about the whole truth. Yours is beautiful.

  8. Thank you for this. It nourished my growth and learning to be real about living with disability. It is so hard. I’m tired of being relentlessly positive. Being real allows meaningful interactions with others.

  9. Well, I sum it up like this:

    Life just isn't fair.

    Nope. It isn't. It isn't supposed to be fair, either. I think, really, that thinking it should be is a psychological illness, a type of magical thinking (but hey, I see that stuff as disability, too).

    I just try to live in the present moment, be grateful for what I do have. It is so hard, it really is, but I do my best. I live in a group home now for disabled adults. I'm not in a wheelchair but I do have hip problems and would probably benefit from assistance because I have (sometimes) severe pain in my hips. But for now I just ignore it. Avascular necrosis is one of my disabilities.

    Just live life, really, is all you can do. Just take it one day at a time, one moment at a time because that is all you have, this moment. Mindfulness helps and I practice meditation.

  10. I was a Nurse for many years, I worked with disabilities of all shapes and sizes. Now I'm the disabled. At first I raged against it, spent years looking for a cure. It wasn't till one of the surgeries almost killed me that I finally got it through my thick skull. I was intubated and tied to the bed, I was fully awake listening to Doctors scare the living daylights out of my family. Honestly, if I could have, I would have punched him right in the face! They brought my son to say good-bye to me, he pronounced very loudly that I wasn't going anywhere, I was to pissed off! If I could, I would have jumped up and danced around the room!
    As the years have passed I have learned to deal. I have good days, I have bad days. But I have today and I have my super power. I make things. Yep, I'm one of those crafter people. When I knit, crochet or spin yarn from fiber, there is this "Ahh" moment. A feeling of peace, relaxation, it's almost Zen like! I have a purpose, to teach anyone who wants to learn. So that they can have this calm, peacefulness for themselves. It drives me to keep trying. This is the road I travel, every time I wake up in the morning I am grateful. I have another day.
    Thank you for your post, I found it very honest and relate-able. You have a real knack for writing.

  11. I have always admired that peace that you have been able to find with your own body. I feel like most disabled teenagers my own age, like me, really struggle to find that peace. At this age, it sort of feels like most days are like the ones you've mentioned where you stare at others with envy, and the ones where you feel happy with who you are are once in a blue moon. But eventually you grow and learn to love yourself as you move on, just like other able-bodied teenagers learning to love themselves after puberty, but at this age it's always a hard thing to do. Of course everyone is allowed to have those moments and, yes, this life is tough, but realise that even those short moments when you're happy of who you are are incredible achievements - Ones I'm struggling to achieve myself.