Why I Chose To Talk About My Disability Online
If you’ve been following me on Twitter or reading my posts for a while, you’ll probably know that I like to talk about my disability a lot online. Even if this is your first time on my blog, you’ll probably realise soon enough that my disability posts are not one-offs.
It may surprise you to know that using my blog as a platform to discuss my disability wasn’t even in the question when I first started this blog. In August 2015, I didn’t even know I had a disability, even though it was something I was born with. Looking back, it can be surreal to think about how much has changed in the last two years.
I’m still telling people about my disability to this day, but it was important to me that those closest to me knew before I went broadcasting it on the internet.
When I went ahead with the decision to talk about it, it was very much going to be a one-off post. I’d seen something on TV and wanted to talk about disability in the media, but I didn’t see it becoming a regular feature. At that time, it was just another opinionated post, in line with what I usually posted about.
As you can probably tell, there’s quite a contrast between my thoughts almost two years ago and what I’ve gone on to do with my blog. So why am I so open about my disability online?
To give family and friends an insight into a disability I might not be able to explain very well in person
I rely a lot on scripted communication in real life, so it can be difficult for me to provide informed answers to spontaneous questions about my disability in the moment. However, I’ve always enjoyed writing—and I’ve always been considerably better at communicating this way than in person or over the phone. It’s become a resource that I can direct family and friends to even when they don’t ask questions about my disability. Not that I push it down their throat, but if they happen to read my blog one day, they might find out something about my disability they didn’t know beforehand. This reason makes sense when you consider that, at first, I never intended for this blog to be a resource for anyone other than my friends and family.
To raise wider awareness and understanding about autism online
While the vast majority of people have heard about autism in some way before, very few people actually understand it. It means a lot of people are quick to fall into believing stereotypes about the condition which may not be true, or may not relate to everyone with the condition. A lot of people, for example, believe that autism is a condition that only affects boys, something we’re seeing to be false more and more as research continues. If you want to read more myths I’ve debunked, I wrote a whole post about them a little while ago. Click here to read it.
I guess by blogging about the things I experience it can also help others to realise that autism is not one thing explains everything, and that it really is a diverse diagnosis. Beyond labelling someone with a high or low functioning label, or a level, we’re really all very different, just like neurotypical people are.
To offer an alternative perspective in conversations about autism
Something I found when researching autism, both before and after my diagnosis, was that a lot of the information out there came from second-hand experiences. I found lots of information and advice for parents and carers of autistic people (especially children) but almost nothing from the perspective of autistic people themselves. I definitely recognise and appreciate the need for outside influences in the conversation about autism, but I think it’s important to highlight the voices of those who know the most about autism, too. What’s better than an insight from someone who can show you what goes on in their own brains?
Steve Silberman, author of Neurotribes, made a good point when asked about a sequel to his book in an interview when he said he “think[s] autistic people should be leading the societal conversation on autism now”.
To show autistic people there are others like them out there
I guess this point could be considered similar to the above, but I wanted to emphasise it because I felt really alone after receiving my diagnosis. Not only was the lack of autistic voices in the media at the time disheartening, but it also made me feel like there was nothing I could relate to. With limited media representation—and when there is, it’s often misrepresented—I felt kind of lost. It made me feel like my condition was rare, even though it really isn’t. And it’s nowhere near as negative as I thought at the beginning of this journey. I guess by being so open about it now, I want to avoid others feeling like I did when I was diagnosed.
Talking about my disability has also enabled me to find and talk to other autistic people online. Bloggers have been my saving grace when it comes to finding people I could relate to. Some of my favourites are Ali Caitrin, who I wrote a guest post for back in April, and Lydia over at mademoisellewomen.
Thanks for taking the time to give this blog post a read. I hope you found it interesting.
Until next time,