An open letter to abled people, about making plans

Our physical needs and limits are not the same as yours. [Image: fat white nonbinary person with short blonde hair, lying with their head on a white pillow, looking exhausted.]

Abled people, when a disabled person agrees to do something for, or with you, please realise they are agreeing to something specific and finite.

They have assessed whatever chore or errand or leisure activity is on the table, evaluated it against their energy levels, needs and abilities, and decided whether they can participate in it safely.

So often, abled people are prone to spontaneous changes of, or especially additions to, preexisting plans.

As a for instance, I just told my mum I was going to walk to the super mailbox down the street to check the mail. My mum walked with me, and as I was making to go into the house, she said, “Oh, can you just help me carry the stuff in from the car?” She’s had a long day, and I’ve been lying down all day, so I felt guilty and said sure. Then we got inside and as I made a beeline for the basement, she said, “Oh, can you just feed the rabbits?” Again, she’s had a long & stressful day, she’d mentioned how tired she is, and I’ve been feeling pretty good today and just lying on the couch reading papers and watching Youtube tutorials. I wanted to say no, but I felt too guilty to refuse.

So I spilled the rabbits’ water all over the floor and myself because I was shaking, and now I’m lying here, so drenched in sweat that I’m shiny all over, my heart rate is 155, and I’m too tired to do much of anything.

And I just realised, this is a huge part of why I so rarely offer to pitch in with chores, or to go along with my mum when she runs errands. Because she always wants to add “just one more thing.” And I can’t do that. And it feels awful to say no, and it feels worse not to.

And this isn’t just a thing with my parents. I remember this happening when I used have the opportunity to hang out with friends. There’d very often be a decision to change plans at the last minute, go somewhere new, just pop over to that shop first, etc. And it hurt me then — every change of plans meant more time spent walking around, which hurt me even though it was invisible. (It also made me panicky, because, as an #ActuallyAutistic person I have a really hard time with imprecise or changeable social plans.)

And it would be outright impossible now, because as a wheelchair user, I wouldn’t be able to check whether a space is accessible beforehand. I am actually very lucky that now that I’m visibly disabled, my meatspace friends have been really cautious about planning, and accommodating me. I know many disabled people who have lost all their abled friends because that didn’t happen.

But I avoided social events for a long time while ‘invisibly’ disabled, because that didn’t tend to be accommodated. (And part of the problem was that I didn’t realise I deserved accommodation for the things I was experiencing.)

So. If you know someone who identifies as disabled or chronically ill, and you are asking them to do something, please take some time to consider the full extent of what it is you are asking them to do and to explain exactly what you are expecting. And if they agree to that, accept that. DO NOT ask them to change or add to those plans.

Even if “it’s okay if they say no”. Do you know how hard it is to say ‘no’ when you know you’re perceived as ‘doing less’?

And, if you want to be a super cool abled friend and ally, when you’re asking a disabled person to do something, ask them if they need to pick & choose from what you’re proposing. Let them know that you’re happy to adapt what you’re suggesting so that they can participate (and then follow through on that adaptation).

I’d also like to note that it may be useful to think about the idea of “active and enthusiastic consent” and realise that applies to all social interaction, not just sex. So if you’re suggesting something, and your friend / colleague / child agrees but seems hesitant or reluctant or sad or tired — realise that that is not consent. When you notice that happening, ask them if they need to you adapt some part of your plans to make things safe for them, and let them know that it’s also okay if they have to decline outright. But also realise that for disabled people spending time with abled people, there is an inherent power imbalance, no matter how close you are — and that many disabled people have a lot of practice with pushing past their limits to accommodate abled society and abled people, and that you may not be able to recognise if a disabled person is not enthusiastically consenting. Which brings me back to my earlier point about why adding “just one more thing” can be very harmful, even if “it’s okay if they say no”.

So. The best way you can work to include your disabled and chronically ill loved ones in your activities is to: (1) understand that their physical needs and limits are not the same as yours, (2) actively engage them in making plans, (3) once plans are agreed upon, do not try to change them.

Finally, I’d also encourage you to familiarise yourself with the concept of ‘crip time’, which this essay does a fantastic job exploring.

If you enjoyed or learned from this post and can afford to do so, please consider supporting my work by tipping me at paypal.me/alexhaagaard.

Disability-led design & health justice. Director of Communications for The Disabled List. They / theirs. Tip jar: paypal.me/alexhaagaard

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