Disability Advocacy: Why I'm Determined To Be open About My Disability Online

Disability Advocacy: Why I’m So Open About My Disability Online

Disability Advocacy: Why I'm So Determined To Talk Openly About My Disability Online. I am autistic, and I'm not ashamed of it. Autism Spectrum Disorder should be embraced, celebrated and better understood, and the only way we're going to do that is if autism parents, autism professionals, and secondary autism advocates join together with autistic people themselves. It's time to make that change.

My disability is a big part of my identity. If you’ve been following my blog for a while, you might know that already. If not, don’t worry; you don’t have to stick around for long to realise just how open I am about it. When I have a whole category dedicated towards my disability, autism, it’s not much of a surprise.

However, it might surprise you that I never intended to use my blog as a platform to discuss my disability in the beginning. In August 2015, when this blog began, I didn’t even know I had this disability, even though I’ve been living with it my entire life. Looking back, it’s surreal to think about how much has changed in such a short period of time.

Even after my diagnosis, I took my time before opening up about it on the internet. It was important to me that those closest to me knew about it in person before I started broadcasting it to the internet. I went ahead and wrote one post that I perfectly intended to be a one-off, but obviously that wasn’t meant to be. Instead, talking about my disability has become a staple part of this blog that I wouldn’t change for anything.

You might be wondering why I decided to be so open about my disability after hiding it for so long in the beginning. Here’s why…

I wanted those closest to me to be able to read about the parts of my disability I couldn’t explain well in person

I’m autistic, which means I’m not the greatest at communicating. I rely mostly on scripted verbal communication, so it can be difficult for me to provide spontaneous answers to questions when they’re asked. However, I’ve always loved writing, and feel far more confident in written communication than verbal communication, so I thought this may might work quite well.

Since starting to open up on this blog, I’ve been able to use it as a resource to direct my family and friends to when I can’t answer their question in the moment. It could be that they aren’t comfortable with asking me a personal question at the time, which is where approaching my blog becomes a blessing in disguise for all concerned.

This isn’t to say I hold my family and friends hostage, telling them they must read my blog, but it feels good to know it’s there if they want it.

Although this was my primary reason, though, I soon realised that I could do more with my blog than simply using it to inform those closest to me about my condition. This brings me onto my next point…

I want to raise wider awareness and understanding about autism online 

While it’s true that most people have heard of autism before, very few people actually understand it. This means that lots of people are falling into believing stereotypes about my disability that may not be true, and at worse, could be damaging to an entire community of people.

A lot of people, for example, believe that autism is a condition that only affects boys. This is something we’re proving false with medical advances and continued research, but not necessarily something people who don’t follow autism news would know. I’ve actually written an entire post dedicated to autism myths that simply aren’t true if you want to know more about the truth behind this condition.

I want people to recognise just how diverse this condition is

So many people are blinded by a single vision of what autism is. They think that autism describes symptoms that everyone with the condition must have, and that’s not the case. In fact, autism is such a diverse disability that it’s suggested that everyone presents slightly differently. This also means trying to group us into sub-groups like high-functioning or low-functioning shouldn’t be used, because our disability just doesn’t work like that.

I want to offer an alternative perspective into the autism conversation

Something I found out when I was researching autism in the weeks and months after my diagnosis was that a lot of the information out there isn’t aimed at the disabled people themselves. Instead, it’s written by and for parents, professionals or carers who have to deal with autistic people. It makes us seem like burdens, and frankly? I’m tired of feeling like my disability makes me a useless contributor to society.

Obviously I completely understand the need to recognise outside influences in the autism conversation, but I think there needs to be more influence from actually autistic people, too. After all, what’s better than finding out information about a disability from those who actually experience it?

 

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 can’t talk for anyone else, but I know after my own diagnosis, I felt so alone. There was very little in the way of media representation at the time of my diagnosis, which made me feel lost, and like a rarity. In reality, the disabled community I’m part of is bigger than I could have ever imagined. By talking about my disability so candidly, I hope to stop others from facing the loneliness I faced after my own diagnosis.

By talking about my disability online, I also opened myself up to being contacted by other autistic people. This was a lifesaver when it came to pulling myself out of the gutter. I saw there were people like me, and I finally felt like I belonged, for the first time in almost eighteen years.

Is there something you’re passionate about talking about online? Let me know why in the comments below.  

Thanks for reading, and until next time,

Goodbye

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You can also email me at rebekahgillian@gmail.com

 

 

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33 thoughts on “Disability Advocacy: Why I’m So Open About My Disability Online

  1. This is a really great post, I can understand the feeling of not knowing you had an illness you were born with as I didn’t find out I had a blood condition till later in life and it’s something you’re born with. I love that you share your experience so that others with autism can read it, that’s really wonderful x

    Kayleigh Zara 🌿www.kayleighzaraa.com

  2. I think it’s amazing that you are using this platform to highlight your experiences with your disability! I think it’s really important to educate others on disability and how this isn’t as clear cut as the media would lead people to believe! I think it’s really inspiring!
    Robyn // http://www.midnightandlace.co.uk

    1. Thank you. It’s definitely not like the media would portray; a lot more positive, though apparently people find that hard to believe!

  3. Great post! I’m always interested to read about things from other people’s perspective, whether it’s someone with a disability, mental health problems, or even just an differing opinion, so I’m glad there are people like you who are happy to discuss life from your perspective. Humans are so varied, it’s important to remind yourself that life experiences are never going to be the same as everyone else’s, and blogs are fantastic for that glimpse into other people’s world as well as awareness. <3

    1. Thank you for such a nice comment, I’m glad you enjoyed the post. I completely agree with what you said about human’s being varied–I love blogging because it really opens people up to how other people live.

  4. I was blessed to work with Autism Speaks when I was in college. It really raised my awareness on such an overlooked situation! I had no idea how many people were living with autism! Congrats to you for being brave and sharing your story! You are helping many!

    1. Thank you. I’m glad you appreciated that I shared my story!
      Autism Speaks isn’t the greatest charity, but I’m glad they provided you with an awareness of a situation you may not have known about beforehand. I’ve written a post here which touches on why you should avoid it, but there are plenty of others on the internet. Autistic Self Advocacy Network (ASAN) and National Autistic Society (NAS) are two charities that I would personally recommend to anyone looking to enhance their knowledge about autism in a way which respects us, and works actively to help us. 🙂

  5. What an inspiring post, wow! It’s so amazing what your aim is here with this. It’s such a shame that people fall for these stereotypes, there’s so much more to it but sometimes people are too quick to judge. Xx

    https://allaboutamy.uk

    1. Thank you! I’m glad you found my post inspirational. It’s definitely a case of people being too quick to judge, but I also think it’s what happens when people don’t have resources to challenge their own beliefs, which is what I (and many other amazing autistic people) are trying to combat!

  6. I thinks it’s great you use your platform to talk about your disability especially as autism is something a lot of people don’t seem to understand. I also think it’s great your debunking some of the stereotypes and myths created by the media

  7. Your posts are always so inspiring. As I say pretty much every time I read on your your blog posts, you are doing amazing just talking about your disability story as it will help SO many people! Amazing post hun x

    Claire | clairesyear.com

  8. Fantastic post as always, Rebekah! I really admire your openness and honesty about your disability, I think you’re a phenomenal spokesperson for austistic people everywhere! I am very glad to hear that writing your blog helps you to communicate with your friends and family, and you’re right that it’s a great way of showing others with autism that they’re not alone – you really do provide a great example of someone who doesn’t let anything hold them back and that is very powerful! I’ve learned so much from reading your blog so please continue to speak out about this topic because it’s so worthwhile that you do!

    Abbey 💓 http://www.abbeylouisarose.co.uk

    1. Thanks, Abbey! I’m glad my blog has been able to teach you about my condition; it’s definitely been an aim of my blog for a while, even if it’s not what I set out to write about originally. It’s definitely not something I plan on stopping any time soon!

  9. I’m so glad you shared this, Rebekah. I have actually met quite a few people living with autism and not one person was the same as the other. It’s aggravating when reading “pamphlets” that say every person with a disability will do a certain thing. Everyone copes differently. I’m very excited to hear you share what it’s like being autistic from your personal experience with it.

    1. Thank you! Yeah, I completely agree. I think people can also be quick to judge the way people cope with something based on first impressions, which don’t always reflect how a person really copes with things.

  10. I think it’s great that you’re so open about this as it helps fight the stigma. I see a lot of mental health blogs/ post, but hardly any about autism/ aspergers so it’s great that you’re raising awareness and giving people an insight into the condition.

    1. Thank you! I think more and more people are beginning to be open about their disability, but there’s definitely still a stigma surrounding it. It can be hard for some people to come out of the wood works and admit to having a disability or being comfortable enough with it to talk about it openly, so I know it’s not easy for everyone. While I can, though, I’m definitely hoping to continue raising awareness as I hope I have been already!

  11. This was my first visiting your site, but it probably will not be my last. I also have a disability- the onset of which only happened 2.5 years ago- and find that talking about my disability and the affects thereof, easier to do online. In person, it seems as if my words become weighted and tied together, making it very hard to explain, especially to people who knew me on my pre disability days. Maybe I should try having scripted responses…

    1. Aw, thank you so much! I’m glad you enjoy my blog enough to want to revisit it in the future.
      I can empathise with what you say about being open online being easier than in real life. Scripting is a useful resource for many in the autistic community, and outside of it, too. I do have moments where I muddle up answers to questions (my friends are used to hearing “I’m good, thanks” in response to “what are you doing?” haha!), but it’s definitely been helpful in situations that may have left me unable to answer in the past.

  12. I think its great that you use this platform not only to share your story but to inform persons about the challenges. Not many peesons understand and or sympathetic to person living with a disability.

    1. Thank you! I think it’s difficult to understanding or sympathise with a condition you know very little about, so I’m hoping that my own story, and other people’s, will help to eliminate much of the stigma that still exists.

  13. Great post. I am not as open to my AS as you are, but I am proud of you for being so brave to tell others about what you struggle with everyday. I wish there were more bloggers like you! You and other autistic bloggers have made me feel less alone, so thank you.

    1. Different strokes for different folks–it’s not the easiest thing to be open and proud about, so there’s nothing wrong with keeping it private. Sometimes I feel like I’m too open with it, haha! Aw, that’s very sweet of you, I’m glad I’ve helped you feel less alone.

  14. You are STRONG Rebekah! Your push to influence others is amazing… I hope you know that there are more than enough people in the world that would be inspired by you 🙂

  15. Hi Rebekah,

    Thank you for giving a voice to many others and being open about your condition. I don’t know much about autism but this has helped enlighten me a lot and I think it’s posts like these that are important because there are so many of us who don’t know enough about disabilities. It’s definitely not a topic that is covered nearly enough in the media and in day to day it seems to be something that is mostly shunned.

    Stay strong and keep inspiring 🙂

    enyiie

    1. Aw, I’m so glad my posts have enlightened you about my disability! It’s definitely been one of my priorities, to try and make as many people aware of my condition as possible. Thank you!

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