Things they don’t tell you about being a disability activist

It’s Disability Pride month right now. To be honest, I’m not feeling it – I am feeling hurt and exhausted. I (and many others) have been the target of bullying within the disability community/sector for some time now.

For the most part, the bullying towards me has been covert, but in recent months – since I received a certain award – it’s amped up – naming me, sharing my photo, and responding nastily to things I’ve written. It’s all public. 

The bullying has had an impact on my work – I’ve experienced fear to write and speak; and also on my mental health – I’ve had panic attacks.

Speaking up has cost me greatly – people disbelieving me, telling me I’m paranoid,reporting my actions back to the bullies. If you support this bullying, we are not friends.

I’m not running any hate campaign. I am simply sharing my experience since 2017, to make it public and share the burden. And I am asking for it to stop. 

I hope to write something more prideful soon.
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Things they don’t tell you about being a disability activist:

Lateral violence occurs and it has have a big impact on your experience of disability and your work in disability activism.

That is, some of the most hateful behaviour you’ll encounter is from other disabled people.

There will be gatekeepers and policing about how you can be disabled and do disability activism.

It’s not safe to have individual success or talk about it – you must only have collective success.

You are made to choose between activism and mainstream work.

You can’t possibly have fun and enjoy life – certainly must not make it public that you enjoy life – you must be angry all the time.

Someone will be waiting for you to trip up.

There will be jealousy. Of course they’ll deny it is jealousy, putting it back on to you by saying you’re conceited.

Disability activism is too white.

Some of the bullies hold a lot of internalised ableism. They aren’t happy with themselves, and have to lash out at someone who is. that and they’re terrible people.

You shouldn’t work for free, but you’ll also be torn down if you earn money working in disability advocacy.

You cannot openly show disability pride.

Some people aren’t professional or mature, and will manipulate and twist the truth to suit them.

You are not encouraged to thrive as an activist – you must stay down.

You should not be interested in fashion or taking pride in your appearance.

Bad behaviour is often blamed on disability.

People will use you for your connections.

You’ll either be too inspiring or not inspiring enough – when you just want to be you.

Awards will be deemed as worthless – pitiful platitudes at best, devaluing the whole disability community at worst.

You’ll be accused of not being disabled enough.

Nothing you do will be enough – enough or good enough. They’ll want more.

You will be accused of taking up too much space – even when passing on the mic.

You will also be accused of not speaking out enough. You won’t be able confirm to their ridiculous expectations ever.

You will be relieved that it’s happening so publicly – because others are seeing it too. Phew! (But you’ll be gaslit and disbelieved so much.)

You will tell people quietly about harmful disabled people and you’ll be disbelieved or because “they do good work” or “that bad behaviour is part of their disability”.

Things I know about being a disability activist:

There are plenty of ways to do activism – there’s room for everyone.

Disabled people that you haven’t met will write to you to tell you that your words and work made them braver and prouder.

Parents of disabled children will tell you that you helped them shake their shame.

Doctors will put you in touch with families of newborns with the same medical condition as you, or you’ll meet them in Facebook groups and you’ll be able to share advice and see their little ones grow and thrive.

You will meet amazing people who are fighting for rights and making positive change.

You will do work that makes your heart full (and heart break) – not only benefiting you but many, many people.

You will take comfort in sharing the same social barriers as other disabled people, even though your diagnoses are not the same.

Change is slow, but it’s noticeable.

It’s better working together.

You will grow and learn and change your mind and make mistakes – that’s allowed.

And there will be far, far more wonderful disabled people who don’t behave in the ways you’ve written about above.

If you’re interested in more of my writing, you can buy my book, Say Hello. You can also buy me a drink on Patreon or PayPal.