Disabled People Have an Ally Problem: They Need to Stop Talking For Us

My mom and I were in the store when it happened. It wasn’t the first time and it wouldn’t be the last, unfortunately. It was a common occurrence, “par for the course” as they say. An acquaintance of my mother (my mom’s real friends know better) had walked over to us and started a conversation with us. Just normal things until she switched the conversation to kids, she looked and my mother and asked “what subject does she like most in school?” Despite standing right beside my mother, despite having been introduced to me by my mother, despite the fact I had nodded quite attentively to what she had yammered on about, she decided to ignore my presence and address the question to my mother. For most abled people, this may seem like a momentary slip up in decorum, but for disabled people this is all to familiar: proximity to disabled bodies are confused with authority over them.

This is a larger problem than many able-bodied allies realize. When it comes to creating policies, starting the planning process or creating spaces for inclusion, too often, the voices of disabled people are overridden by those of abled allies with mere relational proximity to someone disabled. Where feminists see all-male panels on women’s inclusion in executive spaces, the same happens with disabled people and their able-bodied allies. To be true to the mission of disability inclusion it requires that you think of yourself as a vessel to pass along what those in the disabled community has expressed rather than being our voice. Taking up space in advocacy on for a marginalized group is a privilege; one that you can wield to make the public sphere more inclusive or one you can use to center yourself. Ally-ship requires you to do the former, anything else is a performance.

via US State Department | When disability advocates are removed from the voices of disabled people, the product is often the erasure of disability rather than the acceptance and love for one’s body.

As well as frustrating disabled people, taking up space to speak instead of disabled people is ableism in itself. We are constantly being infantilized well into adulthood and speaking for disabled people reinforces that stereotype in the public consciousness. It also spreads the idea that we aren’t autonomous, are unable to give consent and aren’t knowledgeable about the factors that affect our lives.  Before social media and online networking, there were little-to-no examples of disabled people we could look to as examples of what it meant to age into adulthood. What little space we had was overpowered by ableist narratives and the relatives and caretakers of disabled people. I hate to have to tell you (no I don’t), but the authorities on disabled people are disabled people.

Via Wikipedia | Celebrated Australian disability rights advocate Stella Young on stage.

No matter how close you are to a disabled person, you cannot completely know what it means to be disabled or experience the world and its people in a disabled body. There’s no way around it. You may bear witness to our daily lives and still not know what it is like to live as us. That’s why you immerse yourself in the words of the disabled people you care about and educate yourself with the work of disabled advocates. If you’re worried about a disabled person not being able to advocate for themselves when you’re not around, then talk about it. Have that difficult conversation and follow the advice on fostering self-advocates.

When sharing information about us, make sure you point to sources or specific disabled people who can expand upon it. Essentially, pass the mic. Because, no matter the way we walk, talk, communicate, no matter the medication we take, what our bodies decide to do, or what mobility device we use, disabled people will always be the first and last authority on disabled people.

So, what did my mom do each and every time an able-bodied person acted like I wasn’t there? She would smile the smile of a thousand black women trying not to turn the person before them to ash, nod to me and say, “she’s right here, you ask HER.”

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  1. Very well-put. I’ve noticed the same thing, since I’ve begun using a walker. In airports, every one addresses my husband. Did you see MY driver’s license as my ID? Grrr. The way you & your mom handle it is commendable, considering how long you’ve likely been dealing with it.

  2. As always, your insights are so real, and so relatable.

    I have similar stories. One time, I was in Vegas with my dad. A woman asked my dad, “Is he doing ok?” referring to me, and I was standing right there. I replied to her sarcastically, “Yes, he is doing just fine, thank you.” A few folks overheard and smiled sympathetically at me, so I kind of think my sarcasm might have advanced the cause, at least a little bit? Haha.

    Another time, I was shopping at a Polish grocery store near my house. An older Polish woman, wearing a babushka (head scarf, in case you don’t know what a babuskha is), approached me and asked me, “Do you need money? Would you like some money?” I was totally baffled by the remark at first, and didn’t know what she meant. I said, “No, thank you, I’m with my dad, we have money, we’re shopping.” Then she just said, “I love you, I love you, God will reward you.”

    I was so confused by the entire exchange that her comments hit my vanity instead. I thought, “Do I look poor? Did I dress badly in that store?” I mean, my family aren’t millionaires but I’ve never been poor in my life. So I returned to the store in high style, wearing a silver ring with a blue topaz stone, my designer coat with the label sticking out, and my college sweatshirt with the Latin motto on it. She was not there. It wasn’t until later that I even realized it had all been related to my disability.

    Sometimes I can’t even muster sarcasm or vanity for these exchanges, and just get angry instead. I feel like you could do a whole post just on the rhetoric of strangers calling us “inspiring” or “special” or “God’s special people”, but you kinda covered it in your post on the able-bodied gaze. You’re correct in saying that their gaze is fundamentally about them, not us.

  3. Spot on. When I’m able to walk, I’m treated like a reasonably intelligent person. When I’m in my chair, I suddenly become a toddler. People address those around me instead of me.

    It’s an experience I thought I understood until I actually experienced it. I was wrong. It’s so different when it happens to you vs when you hear/learn/see it.

  4. It’s so real. I have also experienced these experiences. I easily related with the whole concept. Thank you for putting it so vividly. 👍 By the way I am a visually challenged woman.

  5. Individuals can be ignorant and say offensive things; that is one kind of problem. Allies are our family, friends, colleagues who are not ignorant in the same way as someone who has no regular interactions with the disabled. This type of ally really cares about the disabled individual they know but then they assume that knowledge automatically applies to all other disabled persons. That is also a problem.
    But the most dangerous ally is the corporation that presumes to stand in for us and project the corporation’s conclusions and opinions on policy and programs. Our society prefers to give authority to corporations as experts on disability. The decision-makers like legislators, funders, and policy makers are more comfortable hearing from non-disabled representatives than from the disability community.
    Too many charities and non-profits have made a fortune speaking for us. They spend money promoting their business as the voice of the disabled. It is amazing to read their ‘annual report’ with “all the thing they do for us” and I can’t imagine why we, the disabled, have any problems at all.
    The disability community itself must take back the power of our collective voices. We are the only stakeholders that matter but usually we are the only ones asked to sit at the table for free while our corporate representatives are making good money telling the system what we want and need. Time to let our allies know we have our own ideas!

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