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21 March 2014 @ 10:37 pm
keep calm, it's only an extra chromosome  
I interupt the usual fandom content to let you know that today is World Downs Syndrome Day. I know there's Sports Relief, and people doing bare faced on facebook, and always all sorts of things going on, but this? Isn't about raising money. It's about raising awareness. So, hi, let me make you aware that there's a genetic condition where people can have an extra chromosome.

Specifically people with Downs Syndrome have three copies of chromosome 21. They're not ill and they don't have a disease. There are certain illnesses that they can be more susceptible to and people with Downs Syndrome have learning difficulties, but they are all unique individuals. They don't have the same illnesses or the same level of learning difficulties. Just like everyone else in the world there's no one size fits all. The Downs Syndrome Association has a great FAQ here and the Shifting Perspectives photograph exhibitions which began with this one are fantastic.

My younger sister has Downs Syndrome. She went to the same Primary School as me, a High School for special needs, and then the local college. Her social skills are fantastic but she can't read, write, or work out money. She can swim and earned badges, has done archery and beat our dad at it, loves learning and has lots of certificates. She has set routines and will not go any faster, even if she's running late in the mornings, and is excellent at ducking household chores. She's a huge fan of Star Trek, Glee, Friends, Strictly Come Dancing, Avengers...her DVD collection rivals my book collection.

Things are both different and not different. I graduated from university and my sister received a City & Guilds certificate. We both got graduation cards. I go out at the weekends with my friends and boyfriend and my sister goes out to a special needs disco, bowling, the cinema, and parties with hers but always with us or a carer. She likes to ask me for boyfriend and sisterly advice. Would things be different if she didn't have Downs Syndrome? Sure, things would be different, but my sister wouldn't be. She'd still be as great a sister and as much a pain in my arse a sister as sisters are. And still educating me in Star Trek.

This year for World Downs Syndrome day there's a t-shirt that amused us greatly and a video below that somewhat problematic in that everyone with Downs Syndrome actually has different abilities, but overall it's solid:



And in the spirit of awareness, I am always open to questions and curosity :) (Although just to note I don't speak for or on the behalf of anyone else, just as what it's like to be a sibling of someone with a disability.)
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Atlas of Clouds: a girl is a gunfranztastisch on March 21st, 2014 11:08 pm (UTC)
Just dropping by to tell you that that story you told me about your sister in Forbidden Planet being very much not amused with the Star Trek comics still makes me smile. She sounds like great fun. :)

Also, did not know that Downs Syndrome was an extra chromosone and not something else. Yey education!
inkvoices: ST:cunning planinkvoices on March 23rd, 2014 12:03 pm (UTC)
They were not accurate enough representations of her tv and film favourites lol.

Yay, awareness works :)
A clean house is the sign of a misspent life: otter hugalphaflyer on March 21st, 2014 11:50 pm (UTC)
What a wonderful gift this message is for your flisters. I had no idea there was such a thing as World Down's Syndrome Day. Regardless of the level of their abilities, everyone I have ever met with Down's -- child or adult -- has been gentle, warm and caring. And that's worth celebrating.
inkvoices: avengers:assassins huginkvoices on March 23rd, 2014 12:47 pm (UTC)
It's only been UN official since 2012, but this has always been awareness week in the UK for as long as I can remember. We used to do a thing at a little local theme park when we were kids with the DSA. I remember one year someone hadn't brought instructions for the tent and the hilarity of watching the adults try to put it up, heh.

As a general thing people with Downs Syndrome are very trusting, scarily so at times, and loving. But then they get PMT and bad days and into arguements with each other just like anyone else :)
happilydancinghappilydancing on March 22nd, 2014 01:18 am (UTC)
Yeah! Love this post. People are people, doesn't matter how many chromosomes they have. Your sister sounds awesome. :)
inkvoices: dr who:everyone is importantinkvoices on March 23rd, 2014 12:35 pm (UTC)
Thanks. Awareness can be such a big thing sometimes, just awareness that people who might be different are still just like everyone else :)
rthstewartrthstewart on March 22nd, 2014 02:13 am (UTC)
Thank you so much for sharing that lovely story about you and your awesome sister.
inkvoices: N:familyinkvoices on March 23rd, 2014 12:36 pm (UTC)
:)
I'm not weird, I'm limited edition: bucky_recoveryanuna_81 on March 22nd, 2014 03:58 pm (UTC)
Hi, and here's a huge hug for you and your sister: *HUG* I don't have questions, I'm just loving this entry a lot, and the video made me cry. (And the T shirt is awesome).

How are you? I never got to thank you properly for the awesome recs you left me during my hospital week. I had so much fun with them :D
inkvoices: avengers:assassins huginkvoices on March 23rd, 2014 12:40 pm (UTC)
Hi you, feeling better these days? *hugs* Glad you lilked the recs.

I tend to be wary about posting about things like this, becuase I don't want people to think it's something i'm shoving in their faces, or that it's another online begging type thing, and most importantly because of my sister's privacy. She likes that I talk about her with my friends, and she's met all of them, but online is kinda different and I wouldn't write about anyone else online in a public post without permission. And on the other hand awareness is always a very good thing. So yes, ramble, but I'm glad this post has had positive responses :)
I'm not weird, I'm limited edition: bruce springsteenanuna_81 on March 23rd, 2014 04:43 pm (UTC)
Yeeep, feeling much better. I had enough time to recover, and it did me good. *hugs back*

I can understand what it feels like, or at least I hope I can, and I think you don't have to worry about shoving this into anyone's face, this really doesn't feel like that. And to me personally this is you sharing something about someone you care for very much, which means sharing something about yourself too. And I have a feeling I got to know you a bit better :)

Awareness and knowledge are important. I remember last year when a doctor told me about a minor health issue I had and I was terrified because I didn't know anything about it - and then posted about it and flisters came to share their experiences with me. You never know how your information might help someone else. :D
inkvoices: bubbles and heartsinkvoices on March 23rd, 2014 06:13 pm (UTC)
I'm just sitting here nodding and smiling, so thank you :)