Get Involved, We Need You

Who am I writing for? 

While connecting with others who live with multiple sclerosis has brought me a great sense of comforting camaraderie, and I have found a “purpose” in writing relatable pieces for the chronically ill and disabled community, one of my biggest driving motivations is to reach out beyond the collective “us” and change the perceptions and stigma attached to disability in our wider society. 

This is proving harder than one might envision.

I do wonder if my nondisabled readers fail to connect with (or really care about) the wider issues attached to disability and chronic illness.  Perhaps thinking “it’s nothing really to do with me”, or feeling like it isn’t really ‘their place’ to share, comment, think about, or call out.  Other than my mum, and my partner when I tell him to, I have rarely seen a nondisabled reader share any of my blog posts about MS or disability.  I rarely, if ever, see a nondisabled person raise awareness of ableism on social media or, heaven forbid, in real life (there’s one exception I can think of; the @iWeigh Instagram account, but I’m not sure if that counts because Jameela Jamil lives with chronic illness herself.) 

My partner recently provided some feedback on a piece I wrote for an external source, asking me “is it worth mentioning how to get people who are not living with MS involved in the conversation?”  

If I knew how to do that, I’d be doing it. 

It’s an issue I’ve been aware of for a while.  I began following disabled people, including others with MS, on social media because disability began to impact me directly.  I actively sought it out.  I became enraged, and engaged, and passionate, and interested in, and aware of, and angry, and frustrated, because I started facing ignorance, and barriers, and exclusion, and stigma myself.  I started reading, and learning, and ‘doing the work’ initially for my own sake; and that’s true of a lot of people who live with acquired disabilities.  We need to start changing this attitude, we need to educate others in order not to perpetuate our own prior ignorance.  Isn’t that one of the cornerstones of human progress?

But you can only lead a horse to water.

There are some amazing disabled people out there, doing amazing, important work – but at times it feels like we exist in an echo chamber, preaching to the choir.  Sharing our outrage with those who already share our outrage.  Disability activism, barriers facing disabled people, ableism and inaccessibility; these are topics that don’t seem to be able to break out into mainstream discussion and consciousness.  People simply don’t think they need to care, until it happens to them. 

This needs to change.  Nondisabled people need to care about access, ableism, rights, and have more general awareness.  Nondisabled people need to be our allies.  Nondisabled people need to talk about ableism, disability, and access with their nondisabled friends, families, and colleagues.  Nondisabled people need to call out ableism and inaccessibility when they see it; it’s not embarrassing to care about other human beings.  But if simply caring about other human beings isn’t enough motivation, I’ll remind you that inclusion benefits everyone.

I (rightfully, and belatedly) see so many people share resources from the BLM movement, or issues of systemic racism, I see heterosexual, cisgender people march for LGBTQI+ rights, I have finally seen men speak out about violence against women.  So what stops nondisabled people supporting disability rights?  Because I hate to break it to you, but you don’t think all Black lives matter, that all gay people deserve equality, or that all women should live without fear if you don’t care about black, disabled lives, or the rights of disabled gay people, or the safety of disabled women (disabled women are more than twice as likely to experience domestic abuse than nondisabled women [17.3% to 7%], and disabled women are almost twice as likely to experience sexual assault. [1])

Disability is the largest ‘minority’ group in the world, and a minority group that absolutely anyone can join at any time, yet it is the most invisible.  If any other ‘minority’ faced the exclusion that disabled people face, on the sheer scale that disabled people still face it, there would be mass public outcry.  Imagine if, in 2021, a Black person was told they couldn’t get into a pub, or a gay person was told they couldn’t take the bus?  But if either of those people were also disabled? “Ah well, it is what it is.”

It’s not difficult to understand why there appears to be such reluctance to include disabled people;  fear, discomfort, ignorance, and pity.  I know people would rather not have to think about chronic illness or disability.  It suits most people to keep disability on the periphery of society so that they don’t have to see it, be reminded of it, be forced to challenge their own fear, discomfort, ignorance, awkwardness.  I know this because I hear it in the undertones of throw-away comments, I see it in the visible squirms, I once felt it myself. 

When I was first diagnosed as a teenager, my stomach flipped every time I saw a wheelchair (or other mobility aid) user.  That learned but subconscious emotional response is something I chose to challenge.  It dawned on me that if I ever become a wheelchair user and thought people responded to my existence in that way, I would be insulted (while also pitying the ignorance and close-mindedness.)  I actively and consciously sought to challenge my discomfort around disability through education, conversation, and exposure to different lived experiences; something that I advocate we all do.

When I became a mobility aid user myself this spurred me on to challenge my own assumptions further.  I was still me; sometimes funny, occasionally sarcastic, intelligent, sensitive, slightly nerdy, writer, reader, sister, partner, daughter, me – only I happened to use to stick to move around, which became the only thing that anyone else seemed to see, and changed how people responded to me. As if every other part of my identity had been sucked out or painted over with the word “DISABLED” in massive, red letters.   Overnight it became utterly, ridiculously obvious to me how absurd our response to disability is.  That person uses a chair on wheels to move from A to B instead of legs, I’m going to treat them completely differently from how I treat every other person I speak to, or maybe just pretend not to see them at all because I’m really uncomfortable about this.

What?

And once you start to challenge your own prejudice, you’ll realise where the real issues lie; the issues that disabled people have been scapegoated to hide. But that’s a topic for a different post. 

I refuse to roll over and allow the world to tell me that I can’t be part of it anymore, simply because I happen to have a disabling illness.  MS is no one’s fault.  Not a whole lot can be done about the resulting disability.  Something can be done about the lack of accessible public transport, better ‘policing’ of people parking in disabled spaces without a blue badge, the lack of accessible housing, the lack of ramps and accessible venues, the ‘soft-barriers’ in societal attitudes towards disability and disabled people, awareness of invisible disability, the disability pay-gap…. I could go on, and on, and on.  The fact that so much could be done to improve the lives and inclusion of disabled people, but that it’s not being done; that is the most infuriating and upsetting thing. 

Disabled people can’t fight this fight alone.  Here’s a non-exhaustive list of suggestions on how you can start to get involved:

  1. Spread the word.  Share posts written by disabled people, like and comment on them to raise engagement and help more people find them.
  2. Follow disabled people on social media.  Follow people who talk about the issues facing disabled people, but also follow disabled people who don’t: normalise seeing disability as ‘whole’ and ‘human’ and ‘multifaceted’ and ‘neutral’.  Normalise disability.
  3. Watch Crip Camp on Netflix.
  4. Read books by disabled authors, and featuring disabled characters.  Read Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann.
  5. Find out about the ‘social model of disability’ and educate yourself.
  6. Become more aware of, and call out or question, issues that exclude disabled people from the wider world.  Notice if a lift has been out of order for a while, an escalator has broken down, steps introduced, a disabled toilet closed, blocked, or full of storage, etc.  Normalise drawing these things to the attention of staff; the more people who point them out, the more likely something will be done about them, and faster. Question exclusion, and lack of disability diversity in the workplace.
  7. Don’t park in disabled parking spaces, don’t block dropped curbs, don’t use disabled toilets!!!! I cannot stress this one enough.  People seem to think that doing these things isn’t much of a big deal, particularly if it’s only to ‘run in’.  They are a big deal. Just don’t.  These things aren’t ‘perks’, they’re access requirements.
  8. Talk to the disabled and chronically ill people in your life, while respecting their energy and boundaries. 
  9. Talk to the nondisabled people in your life about the issues, barriers, and attitudes facing disabled people.  (But talk to disabled people before implementing any changes or making assumptions – remember: “nothing about us, without us”.)
  10. Read up on ableism.

Now go forth and conquer, you wonderful little ally.


[1] Office for national statistics (England and Wales) https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/bulletins/disabilityandcrimeuk/2019#disability-and-crime-data

1 comment

  1. You are quite right, Evie. I do not look at social media much any more, I read your blog as it is emailed to me. I am very proud of you, what you have to say is extremely important and I will email your posts to my friends.
    I hope you are OK, it would be lovely to see you before too long. AJ X

    Liked by 1 person

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