I was asked the other day what I did “for work”.
So what I do:
* I serve on the boards of several organisations – all of which are involved with disability, most of which are led by disabled people for disabled people, some of which are autism specific. I even hold significant positions on some.
* I heartily believe in increasing the capacity and capability of disabled people, whatever that might look like for them, so they can live their good life.
* I study (disability studies).
* I work hard to try and change attitudes towards disability. I embrace disability with the social model and I embrace Autism as part of my culture and identity as much as being deaf is. I have disability pride, Autistic pride and I make no apology for that.
* I submit on legislation that impacts on disabled people.
* I serve on advisory boards and push hard for change.
* I attend various workshops hosted by Government Departments to ensure a disabled perspective is added to the mix whether they intended for that or not.
* I Chair a local disability advisory group so we can have an impact at a local authority/council level, I’ve long way to go on that one.
* I do online stuff – often obvious, sometimes not.
* I’m a parent and grandparent – roles I take seriously and commit to.
It’s been a hard road because although I think I am easy to work with, and I work hard, there are a lot of ‘office politics’. I thought the hardest work would be with those who are not autistic, those who are not disabled but I was surprised by how wrong I was. While I found acceptance from disabled people – those most doing the real work on the ground, those outside social media platforms. when I was most vulnerable I found acceptance from non-Autistics. This colours my point of view – I don’t regard all non-Autistics in a negative way, as a group to be attacked. Instead I view them as a group that could be open to change, to learning, I lean towards disabled people who can consider a wider perspective – those who try to understand a range of impairments. This is actually incredibly important as many Autistics have other impairments, as I myself do. I listen to genuine activists – those doing the true hard yards, not those blowing their own trumpet solely on facebook.
As a result, where there should have been community support there was often isolation and ostracising.
* I was often hurt and disappointed by my fellow autistics. There have been times of loneliness and struggle because I’m an autistic who can and will defend myself and my choices articulately to other Autistic activists and I’ve had this stated as “silencing others”, apparently so much so they can’t be named (ironic in a group of so called activists).
* I’ve had my words twisted into intentions or words I never intended and then broadcasted on social media.
* I was attacked by so called “Autistic leaders” who showed me they were nothing but shallow followers of one almost cult-like leader.
* I have had a so called ‘secret’ file made about me (except not so secret as part of it was sent to me).
* I’ve been stalked by fake profiles on FB – mostly all belonging to one person.
* I’ve had outright lies said about me personally – mostly by my stalker and his allies.
* I’ve been personally attacked by some factions seeming to think nothing is wrong with attacking my personal appearance, mostly by a male.
* I had my mental health attacked by a so called Autistic leader who failed to consider ableism (and got it wrong in any case).
* I’ve even been openly defamed with others (and at least that post had consequences for the person involved).
* I’ve had family members bullied by having things said about them that are simply not true and were quite frankly concerning. If they had been true they were evidence of grooming that some like to dismiss simply as “autistic behaviours”.
* I’ve had fb ‘friends’ feel the need to talk about me to my stalker, some have found out later just how wrong they were about me and how much my stalker is a problem in the Autistic community and they were left hurt and damaged too.
Why I am writing this post? Because the same factions that did the above, do it others, have done it to others for years, and continue to do so without any consequences for their actions. They hound others, they dogpile on those who hold a different point of view to their own. They seem to have a self-inflated sense of themselves and forget we are all humans, we are all in this together. They demand apologies for others and yet never give any for their own words or actions. I was lucky – I was strong and I found a village. But some won’t be so lucky.
You might wonder why I haven’t taken any legal action – I’ve been tempted to at times.
It’s because for Autistics to do so requires a huge commitment of time and energy and I have better things I want to do with my limited time. I don’t want my community dragged through a court system that won’t understand us and may not be able to actually change things.
I want to be creating change for my communities – real, lasting and positive change. So I no longer call myself an activist, I call myself an advocate. I will work alongside others and I recognise the place for allies and my fellow disabled people to contribute however they feel they can.
I was asked the other day what I did “for work”.