Why I Refuse to Light It Up Blue | Autism Awareness Month 2017

why i refuse to light it up blue

Today marks the beginning of Autism Awareness Month, and with it comes campaigns which hide behind autism to portray their own damaging motives. For that reason, I refuse to Light It Up Blue for Autism Awareness.

You might be confused by that statement, considering that I’m autistic myself, so let me explain.

Light It Up Blue was set up by Autism $peaks to run alongside autism awareness month in April. This charity is problematic for several reasons, with some autistic people claiming the charity uses autism as a front for installing fear in communities and to support eugenics. It’s no secret that, up until recently, autism speaks stated that they hoped to find a cure for autism openly on their site. Did you know that only four percent of funds raised go towards supporting actually autistic people and their families? If you want to read more about why you shouldn’t support this charity, you can do so by clicking here.

Don’t worry, you wouldn’t be the first person not to know the truth behind this campaign. Even larger companies like the London Eye were unaware of the negative connotations behind this campaign until recently. This company specifically listened to complaints made against them, and have decided to make changes as a result. Instead of lighting the London eye blue on Autism Awareness Day on April 2nd, they’ve chosen to light it up pink instead. This is in support of the UK charity, National Autistic Society, as they announced earlier this week.

This campaign has spread a lot further than where it originated in the US, too. That means people in other countries are innocently supporting something with no idea of the negative connotations behind it. In the UK, Autism Speaks presents as Autistica. This means even people who don’t want to support the charity may be doing so without meaning to.

A lot of my Facebook friends in England last year changed their profile pictures in support of the campaign. I knew then that I didn’t like it, but I didn’t know how to express that to people. I hope this blog post provides people with an explanation I wasn’t able to provide at that time.

But if not this campaign, how can we support Autism Awareness/Acceptance in April?

Fear not; I have just the thing!

boycott #lightitupblue and support #REDinstead

Red Instead is a campaign created by Actually Autistic people to offer a more realistic view of our disability. It aims to drown out the negative information spread by the Light It Up Blue campaign, by promoting love instead of fear. It also promotes the idea of Acceptance, because awareness isn’t enough to understand us. This campaign also provides you with another way to support autism this month, with a Facebook profile picture. You can do this yourself by clicking here. You can find their accounts on Twitter, Tumblr, and Instagram at @beredinstead for more information.

I also recently discovered another campaign, aptly named Tone It Down Taupe. This aims to do similar things to the #REDinstead campaign by toning down the fear rhetoric, and alarmism. Their belief is that you don’t need to light anything blue to show support for autistic people. You can find their accounts on Twitter, Tumblr, and Facebook at @Toneitdowntaupe for more information.

 

In reality, I know my words are like a drop in the ocean in this conversation. As one person, I have very little influence over changes that are made, but I am not alone. I am part of a collective of autistic people sick of being ignored, spoken over and insulted. I’m part of a community who are sick of people thinking that cure culture is okay, ignoring how much it excludes autistic people, and how it makes us feel.

If you have made it this far, please don’t ignore what I’ve written. Join the campaigns which support autistic people, instead of those that actively working against us. Listen to Actually Autistic people duringthis month, the true autism experts, instead of those who wish to cure us. Some autistic people fear April so much they actively avoid social media throughout. Let’s change that.

This isn’t going to be my last post about autism in April. If you don’t want to miss a post, be sure to follow me on Twitter, Instagram, and Facebook.

Thanks for reading, and until next time,

Goodbye.

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40 Comments

  1. beautyandbeet

    01/04/2017 at 7:03 PM

    I was completely unaware of the negative consequences of the Light It Up Blue campaign; thanks for sharing and educating 🙂

    1. RebekahG

      01/04/2017 at 9:15 PM

      A lot of people aren’t. I definitely wasn’t before I received my autism diagnosis and became involved in the autism community. I’m glad you learnt something new with this blog post!

  2. MissBriannaMarie

    01/04/2017 at 7:45 PM

    Love this post so much! It was very well written and I love how at first you were very vague but then explained yourself as the post continued! Can’t wait to see all the future posts!!

    1. RebekahG

      01/04/2017 at 9:16 PM

      Thank you so much for the feedback!

  3. Sarah

    01/04/2017 at 8:15 PM

    Excellent post. I too have heard unpleasant words concerning a certain blue organisation. The main charity I support is the NAS due to the help and guidance they have shown to us. What ever we chise to do tomorrow let it be about raising awareness, acceptance and understanding.

    Let’s start a conversation. Our most popular blog post of all time is being republished tomorrow at 10am. BellybuttonPanda.co.uk

    1. RebekahG

      01/04/2017 at 9:21 PM

      I’m glad to find other people not supporting that certain blue charity either! National Autistic Society, for the most part, are so helpful. They listen to autistic people and actually support the people their charity raises money for. It’s great to know that changes are actually being made when you take part in survey’s and stuff.

  4. Kia

    01/04/2017 at 8:34 PM

    I had no idea about any of this! Thank you so much for sharing and educating me on such an important issue. It is vital that we learn as a society to value all members and not try to “cure” things that are not to be cured but rather acknowledged as valuable parts of who we are. So many times people try to get rid of people who are different than they are instead of embracing them and seeking to learn from and enjoy the differences that make us all so much richer.

    1. RebekahG

      01/04/2017 at 9:26 PM

      You’re welcome! I’m glad I was able to educate you about this.
      Yeah, I definitely agree with what you’re saying–that’s a lot of what the alternative campaigns are trying to promote during this month, which is great. Acceptance as opposed to awareness for a cure is definitely the best option of the two.

  5. Elle

    01/04/2017 at 9:57 PM

    I had no idea! Thank you for opening my eyes, great post. I look forward to more from you! #redinstead 🙂

    1. RebekahG

      02/04/2017 at 6:58 PM

      You’re welcome. I’m glad this blog post was able to teach you something. There’ll be blog posts just like this one all throughout Autism Awareness Month this April, so this won’t be the last you hear from me on this! #REDinstead for sure. 😜

      1. Elle

        03/04/2017 at 1:55 AM

        Wonderful! I’ll keep my eye out 🙂

  6. Jenna

    02/04/2017 at 8:14 PM

    I had no idea that the Light It Up Blue charity had such negative impacts. Thankyou for raising awareness and sharing x

    1. RebekahG

      02/04/2017 at 8:35 PM

      Not many people do, in all honesty. I’m glad you were able to learn something from this blog post! 🙂

  7. jodiedcmitchell

    02/04/2017 at 8:35 PM

    I had no idea! 4% is a ridiculously low amount, that’s appalling! It’s good that such large companies are realising too though x

    1. RebekahG

      02/04/2017 at 10:53 PM

      It really is, isn’t it? You would have thought that a charity gave more towards those who needed it, instead of feeding it into the pockets of their CEO’s.
      Yeah, that’s definitely a great thing. It’s been a bit fight in the autistic community to get people to listen to us, but now people are realising why blue isn’t the greatest colour when it comes to autism. I didn’t mention it in this post, but Lindt chocolate have stopped using Autism Speaks as their charity for their Easter Bunnies (I think that’s an American thing, but still worth mentioning), which is another step in the right direction.

  8. Debbie

    02/04/2017 at 8:50 PM

    Great post! I love how you’re using your platform to raise awareness, it’s very inspiring! 💛

    1. RebekahG

      02/04/2017 at 10:50 PM

      Thank you! I don’t blame people who can’t raise awareness with their platform, but I think it’s definitely beneficial to do so if you have the ability to do so. It’s something I really enjoy sharing awareness about, too, so it’s very much a win/win situation!

  9. Ellie

    02/04/2017 at 9:00 PM

    This was a really interesting read & I had no idea about the negatives of light it up blue. Thanks for sharing I’ve really learned something from reading this post.

    Ellie Xx | http://www.make-it-up.co.uk

  10. Melissa

    02/04/2017 at 10:28 PM

    This was really well written and interesting to read, thank you for sharing and raising awareness! #RedInstead ❤️

    Love, Melissa x
    http://www.lovemelissax.co.uk

    1. RebekahG

      02/04/2017 at 10:50 PM

      Thank you! I’m glad you found it interesting!

  11. Gone with a whim

    04/04/2017 at 3:28 AM

    I came to your post through the Blogging Squad. I’m sorry to hear that your community has to deal with scams like this. I had no idea that light it up blue didn’t that. You are inspiration for speaking up for things that matter to you and thank you for educating me. Great post!

    1. RebekahG

      06/04/2017 at 7:04 AM

      Thank you! I’m glad you were able to learn something from this post.

  12. becca

    04/04/2017 at 3:30 AM

    Thank you for sharing & educating. A lot of times I don’t participate in these things because I don’t know enough about them to do so. But then, you just look like a jerk if you don’t. It’s unfortunate that people create campaigns and fundraisers as a way to fund their own pockets.

    1. RebekahG

      06/04/2017 at 7:06 AM

      Yeah, I know what you mean. I thought this blog post would be a lot more controversial than it was, because so many people I know support the Light It Up Blue campaign. It turns out that the ones supporting this movement turned a blind eye to my post anyway, but I’m glad it’s fallen upon the eyes of so many people who want to be educated! It is–unfortunately, I don’t think that’s going to change any time soon!

  13. Raluca Loteanu

    04/04/2017 at 3:40 AM

    Thank you for sharing these ideas! Promoting love instead of fear is a great way to raise awareness and acceptance!

    1. RebekahG

      06/04/2017 at 7:06 AM

      Yeah, it definitely is!

  14. Rae

    04/04/2017 at 5:13 PM

    A great post! I admire the courage it takes to call out a pretty hefty company like Autism Speaks. I’ve heard this complaint of them before and I’m sharing your experience and message on Pinterest. While “Light it Up Blue” is a tired marketing scheme, I think spreading awareness is important, and not just one day out of the year. I look forward to reading more of your posts 🙂

    Rae | Mindful Rambles

    1. RebekahG

      06/04/2017 at 7:09 AM

      Thank you for sharing this!
      It definitely was scary, but when so many people within the autistic community complain about it, it makes me feel slightly more confident that they aren’t going to do anything about this. In an ideal world, they’d take the complaints we make and turn them towards changing the way the charity operates altogether instead of just the wording they use, but that’s too much to ask, evidently.
      Yeah! I 100% agree with what you’re saying about raising awareness/acceptance at all times. It’s something I aim to do, which is why I don’t just write about it during the month of April. While I feel this is a great way to inform people about a condition they might not have known about before, it’s vital that this continues after April, too.

  15. czechmomnyc

    05/04/2017 at 1:57 PM

    Thank you for this article!

    1. RebekahG

      06/04/2017 at 7:10 AM

      Thank you for reading it!

  16. Krysten

    06/04/2017 at 2:29 PM

    Amen to this, thank you for sharing. Hopefully this spreads a little awareness.

  17. Katie Arnold

    06/04/2017 at 2:47 PM

    “In reality, I know my words are like a drop in the ocean in this conversation.” <<<—RE: You may be ONE person, but your voice is so important. Don't stop standing up for what you believe and know to be true.

    1. RebekahG

      07/04/2017 at 6:43 PM

      Thank you so much for your comment! I definitely don’t plan on being quiet any time soon. 🙂

  18. aalexist

    06/04/2017 at 5:58 PM

    Thank you so much for this post. I followed ToneItDownTaupe and BeRedInstead on Twitter. Ill make an effort to head over to the London Eye when it’s pink and share this post on the day.

  19. Neely Moldovan (@Neelykins)

    06/04/2017 at 9:28 PM

    This is a super interesting take

  20. Victor

    14/04/2017 at 5:52 PM

    The statistics that you mention are no longer accurate and are quite old at this point. This includes the charts that were linked to boycottautismspeaks. Perhaps Autism Speaks had a different funding structure in the past, but it seems to have changed.Both Charity Navigator and Give.org show that Autism Speaks returns 72% of its revenues into it’s program and only 5.1% of it goes to administrative costs. Autism Speaks has been instrumental in my home state in helping lobby for legislative change for insurance coverage. I appreciate your work and people like you for helping to keep charitable organizations honest in their accounting and practices. Best wishes to you this month and I hope that Autism acceptance grows.

    1. RebekahG

      15/04/2017 at 4:30 PM

      I’m not sure whether I’m convinced that much has changed, and I’m quite weary about just what they cover, but I’m glad you’ve found something positive in it. I’m in England so I don’t know the practices of American charities very well, but from what I’ve heard from other autistic people, they change their policies without doing much to their actual charity. The structure might have changed since the director died, though. I’m not completely sure.
      Yeah, I definitely hope Acceptance grows in the future. 🙂

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