Allies: Are You Hurting Us Or Helping Us?

I’m tired.

I’m tired of being told how I should and should not do activism. I’m tired of feeling like someone is always working against me when they claim to be working with me.

My entire life I have been told I’m not doing things right, need to do more and/or try harder , but I don’t put up with it anymore and I won’t put up with it in my activism either.

Allies are a super important factor to any civil rights movement. We need allies because the fact is some people won’t listen to us, but they will listen to the same message from a person of privilege.

Image description text reads: “Constant pressure to perform in ways that we really are not able to is not only unfair to us, it is discriminatory and oppressive” — The image background is square with a light blue center and fades out into white.

My favorite article on being an ally comes from the ASAN website and is written by Kassiane Sibley which you can read HERE. She admits being an ally is hard work and that we expect a lot out of our allies, which is very true.

She points out something I wish to expand on: Being an ally is not a conditional thing,  I’ve seen people who are supposed to be our allies and claim to be intersectional activists call out Disabled people and disability organizations that are ran by Disabled people because they didn’t *jump* fast enough for XYZ issue.

I’ve seen them say things like “If you’re not with me on my issue, I’m not with you about disability”


And this is a nope for 2 reasons:

(Note the use of *we* is meant to include Disabled individuals, disability organizations ran by Disabled people and other communities ran by Disabled people)

Reason #1.  If you’re an ally to Disabled people, you are an ally because it is the right thing to do not because you can get something from us.

If you are really an ally to Autistic and Disabled people, instead of demanding we *do this thing right now or else* you need to be thinking about why we may not be able to do that particular thing in the time frame you think we should.

In other words check your privilege. 

Accessibility barriers may exist and can include things like not having enough energy (physically and/or mentality) to handle certain subjects or do certain things.

Constant pressure to perform in ways that we really are not able to is not only unfair to us, it is discriminatory and oppressive. It can be very damaging to us, draining us mentally and physically, and can be a hazard to our overall health.

It is important to remember that Autistic and otherwise Neurodivergent people need a lot of down time and/or prep time in general. It’s easier for a lot of people to remember that about Autistic kids, but it applies to Autistic adults as well.

Often, we must pick where our energies are best spent for self preservation purposes. Personally, I have had to scale way back on things I love to do, because they take energy away from all the things I need to do just to survive.

I have to make decisions everyday about how best to conserve my spoons. Those decisions are not easy for me to make because I want to do *all the things* but am not able to and I am not alone in that aspect.

So, what can you do instead of demanding things from us?

Well, if you’re worried about why we haven’t taken on a certain issue, the best course of action is to sincerely ask us (not call us out and/or shame us) and offer your help/support if we say we’re overwhelmed with responsibilities. Help is almost always welcome!

But, if we tell you we can’t take on a certain issue for a certain reason, please presume we are competent enough to know that is what is best for us.

Reason #2. If you claim to be committed to intersectional social justice it does not mean you get to put up road blocks at certain intersections.

Saying you’re intersectional, but won’t support Disabled people because they aren’t showing you they care, in the way that satisfies you, actually means you are not being intersectional. Intersectionality just doesn’t work that way.

Trust me when I say we do care and we already feel guilty we can’t do more. Please don’t force more guilt and shame upon us. The shame and guilt society lays on us is enough already, we don’t need it coming from people who claim to support us.

Moving on…

Some of us in the community are the main contributors to many of the projects you see.  We put a lot of energy into many of the activities and events that we host. We pick which autism/disability issues we address and how we would like to address them (again because of spoon conservation).

So, when we see a supposed ally speaking publicly about how they believe we should or should not do things the way we are or they state they will being doing their part, but in the opposite manner because *we* have it so wrong (this is usually done passive aggressively, not directly) ,we get a little bit angry.

We get especially angry when the voice of the nondisabled ally seems to be more important to others than the voice of actually disabled people about disability issues.

This is speaking over us.
This is undermining our efforts.
This is oppressive behavior.
This is the opposite of what an ally is supposed to do.

We should not fear taking care of ourselves and having to say no. We should not feel on the edge of being called out or shamed all the time, especially in our own spaces, for being unable to do something because of our disabilities. We should not feel guilty or pressured to do more than we are able.

Those are the things our allies are supposed to push for other people to stop doing to us, yet here I am writing about our allies not doing this to us.

So, if you’re a nondisabled ally do some privilege checking and think about all of this the next time you want to push us or expect more from us.

Ask yourself “Am I helping or am I hurting?”

About Kimberly Steiner



  1. lisa on July 12, 2015 at 2:01 am

    i had few ‘allies’that didn’t throw in the towel because they claimed i wasn’t making an effort their way. this does not count one psychiatrist i had that seemed to know i had to shift into ‘auto-cruise’ so to speak in order to not have a breakdown. i did not quit my job. i had a tourettes outburst and was too ashamed to go back to work. the wretched people at vocational rehab i have encountered are like rude robots. i have only had two over the decades that had a heart and one of them had a son with autism. no one else ‘gets’ me and it is so very hard to find those allies you describe. chances are very slim.

    • Scott Garner on October 15, 2015 at 11:17 pm

      I agree to many aspects in how you feel. We have to many parents that have a one track mind on the term advocate. I have two son’s with autism one non-verbal. Many people don’t see that you may not agree with all the things some expect others to do. You just have to let people like that not get under your skin. I’ve had “advocates” give me some of the most unreal advice in the last 10 years. Great read by the way, thanks.

    • Kathryn on October 16, 2015 at 4:15 am

      Lisa, your situation sucks in what are sadly typical ways for the neurodiverse. I am sorry to hear about it but unsurprised given the way Voc Rehab treated me.

      You seem to be reading “allies” as in personal “Team Me” allies, but I believe (based on the larger social justice context) the blog is about allies for groups and movements, not someone’s personal supporters.

      For example, I made some ignorant comments about Black Lives Matter, and instead of pointing out I had been hypocritical about those activists, I was full-on shamed and called a “gross white person” by other Autistics who said I couldn’t be intersectional unless I was 100% behind Black Lives Matter. If I wasn’t doing it their way, I was a racist. Not just accepting that the BLM activists are completely justified in their outrage at police brutality and murders of Blacks (some of whom are Autistic, which is definitely intersectional), but actually dropping everything I’m doing to promote their cause and hopefully demonstrate in the streets with them. Even if it means traveling across the country to where the latest reaction to atrocity is happening. Given that I am Autistic and already at maximum-spoon-burn-rate running my business, that is not a realistic expectation.

      I am ashamed to say that I responded by behaving like them to my friends and offended many of them to the point of being permanently blocked. Because that is not an appropriate way to behave. I should’ve stood up to the first set of bullies instead of joining them… but they were holding the shame of racism over my head.

      I believe this is the type of situation the blog is about.

      I am sorry you don’t have personal allies, a Team Me. I am finally building one, but it’s definitely one step forwards, ten steps back sometimes, and it doesn’t help that I will sabotage my own efforts sometimes.

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