Crip Feelings

How are we meant to hold the fact that we live in a world so designed to exclude us that we become grateful for the scraps of access we’re given, and how do we still move through it with confidence?

Image: Jamie Hale in Quality of Life is Not a Measurable Outcome by Shona Louise Photography

As a species, we are remarkably bad at sitting with the feelings of another. To recognise immense feelings, immense pain in someone else, is to acknowledge that the same set of feelings may be true for oneself one day, that the explosive agony they’re holding could become your own.

We deal with distress by gently dismissing it - “you won’t always feel that way”, “it gets better”. This allows the speaker to brush the pain away, instead of holding it, and in doing so reassure themselves that were it to happen to them, those feelings would pass for them too.

I have feelings about being in a wheelchair, and they’re not feelings I have anywhere to place.

There is a positivity around disability sometimes that almost requires one to speak of the advantages, of being happy to be this way, of not wanting to swap it for a non-disabled life. I am a proud advocate for the advantages, for the opportunity to be actively disabled by barriers and yet to have a full and delightful life, relationship, job, friendships, etc. I want to speak about these to reassure the newly disabled, in particular, that their lives too can be full and meaningful.

But that’s not the only picture, nor is it the full picture.

There are elements of my life that are agonising - some socially constructed, and some the medical result of my condition. I live with the constant knowledge that I am losing independence - or perhaps (to borrow the language of Deaf Gain) gaining interdependence. I live with a level of pain that suffuses everything I am, and has changed me permanently. My body poses a constant fight for me, where nothing is easy; it threatens me with frequent hospital visits, and I fear that one day it could go wrong in a way that kills me.

Speaking to me about my pain, you are reminded that you, too, could end up living like this. Can you honestly say to me that “it gets better” when my body is on a slow, one-way trajectory? Language for discussing the pain of this reality breaks down, and I know few non-disabled people who can sit with how awful this is without looking for a way to dismiss or minimise the suffering - the grief, the misery, the anger turned in on my body and mind that I am going through this.

I have no blame for friends who struggle to hold my feelings - feeling the full force of this loss is impossible even for me, I can only approach it in drips and drabs. To ask someone else to hold not just the pain of my own loss but also the fear they have that this could one day be them is a request so steep as to feel impossible. I understand their inability to sit with my medical reality, not just for the scale of it but for the fear of their own futures in bodies like this.

I find it harder when my feelings are about the barriers I face - and yet people who don’t face those barriers still cannot hold those feelings. When I express my pain about things I could do, if the world were adapted, and yet I can’t do, how can someone able to do those things react to my pain?

Those feelings for me are characterised not just by the inward anger of my grief but the outward anger of my exclusion. And when I’m angry at the decisions that have been made that exclude me, I also hold an implicit anger at people who are not excluded and who even benefit from spaces not containing people like me. Your swimming pool is quieter for not having a hoist for people like me, your tube train emptier for stops not having access, your world has more space in it, the less I am in it.

This anger at inaccessibility eats away at me and burns the people around me, who cannot truly sit with the exclusion I face. Because for those people around me, it’s not just the awfulness of the barriers I face, it’s worse: Firstly, they know that they don’t face those barriers; secondly, they know that they benefit from the existence of the barriers; and thirdly, they know that their own actions perpetuate my exclusion. If the world chose to boycott inaccessible infrastructure, access would happen quickly, but it doesn’t make this choice.

And nor do I carry out that boycott. Somewhere in this crip anger is another level directed at myself, a hypocrite, who is angered by people doing inaccessible things and yet willing to go to a captioned theatre performance with no BSL interpreter, instead of adding to the demand for BSL performances. I am letting my fellow deaf people down with that decision, and yet I’ve made it.

Sometimes my feelings have nowhere to go. Sometimes I cannot even be angry. I look at hiking paths, and natural swimming lakes, and swallow the fact that to tarmac the paths would destroy the unspoilt countryside. Are these barriers inevitable? The right off-road chair would give me some freedom, but I would still hit a rock formation I couldn’t climb in my chair, however good. Maybe this barrier is neither socially constructed nor entirely an inevitable result of my condition. Maybe I don’t have to find the solutions to the barriers, and can just acknowledge the pain of them.

How are we meant to hold the fact that we live in a world so designed to exclude us that we become grateful for the scraps of access we’re given, and how do we still move through it with confidence? How are we meant to hold friendships and relationships with people whose lives are structured on taking advantage of the opportunities we’re closed off from experiencing? How are we meant to hold these difficult feelings with care both for ourselves and the other?

I sometimes think the answer is just acknowledgement. For people to see a barrier and say it’s awful, to be sorry, to acknowledge that it is their ambulant privilege that lets them walk across a landscape a wheelchair user would never accomplish, and just acknowledge, meaningfully, the advantages that have accrued to them.

Sometimes feelings don’t need to be fixed - and sometimes they can only be shared.