Why I Chose To Talk About My Disability Online

why i talk openly about my disability, being disabled and autistic on my blog

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.

the more people who understand autism, the better. it's key to a diverse community.

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,

Goodbye

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33 Comments

  1. Kayleigh Zara

    26/08/2017 at 6:20 PM

    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

    1. RebekahG

      26/08/2017 at 8:20 PM

      Thank you! I’m glad you liked my post! 🙂

  2. Robyn

    26/08/2017 at 6:26 PM

    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. RebekahG

      26/08/2017 at 8:21 PM

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

  3. Zinzi

    26/08/2017 at 6:38 PM

    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. RebekahG

      30/08/2017 at 10:55 PM

      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. Britney

    26/08/2017 at 6:53 PM

    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. RebekahG

      30/08/2017 at 10:57 PM

      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. Amy

    26/08/2017 at 6:55 PM

    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. RebekahG

      30/08/2017 at 10:58 PM

      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. thebookbloggeronline

    26/08/2017 at 7:35 PM

    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

    1. RebekahG

      30/08/2017 at 10:58 PM

      Thank you! It’s definitely something I aim to do, alongside many other people in the autistic community.

  7. clairesyear

    26/08/2017 at 8:28 PM

    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

    1. RebekahG

      26/08/2017 at 8:45 PM

      Thank you! I’m glad you enjoyed my post. 🙂

  8. AbbeyLouisaRose

    26/08/2017 at 9:11 PM

    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. RebekahG

      30/08/2017 at 10:59 PM

      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. klolszewski

    26/08/2017 at 9:43 PM

    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. RebekahG

      30/08/2017 at 11:00 PM

      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. Shell

    26/08/2017 at 11:57 PM

    You are an amazing young lady to share your story to help others on their journey !

  11. Alice

    27/08/2017 at 7:42 PM

    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. RebekahG

      30/08/2017 at 11:02 PM

      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!

  12. dvn ms kmz time travel

    28/08/2017 at 3:36 AM

    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. RebekahG

      30/08/2017 at 11:03 PM

      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.

  13. Shevoneese

    28/08/2017 at 12:34 PM

    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. RebekahG

      30/08/2017 at 11:04 PM

      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.

  14. placeinthisworld247

    28/08/2017 at 2:28 PM

    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. RebekahG

      30/08/2017 at 11:05 PM

      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.

  15. ceehergo

    30/08/2017 at 7:49 PM

    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 🙂

    1. RebekahG

      30/08/2017 at 11:05 PM

      Thank you so much! This was such a nice comment to read. 🙂

      1. ceehergo

        01/09/2017 at 5:52 AM

        🙂 😉

  16. enyiie

    31/08/2017 at 11:11 AM

    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. RebekahG

      02/09/2017 at 3:52 PM

      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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