Wednesday, 6 March 2013

SPREAD THE WORD TO END THE WORD - my experience of working with people with disabilities


**Please note I am being excruciatingly honest in this post and I definitely come across as the most selfish, spoiled, undeserving person in the world so I apologize - I think the honesty is necessary though.**

Now for something completely different: This is an issue that is so close to my heart I had to share it. I have never been one to get offended by someone using words, and up until very recently I always thought it was ok to joke about any topic. Summer 2011 changed all of that for me.

I was in 3rd year of my Speech and Language Therapy Degree when I got an email (we had gotten the same one every year since starting college) asking if we wanted to work in a camp in America for people with disabilities. The idea of going to America had always appealed to me but the idea of working with people with disabilities never had (NOT saying that I didn't want to work with them, just that it had never seemed especially desirable or as something I would love or would have thought to do). For some reason however, my friend and I decided to interview for jobs there as cabin counsellors. My friend wanted to go for actual good reasons, I wanted to go because I am selfish and thought it would be so cool to get to go to Sephora and Forever 21 and we both knew that it would be great experience for our course and would look good on a CV. Throughout my life I had only ever known one person with any kind of disability - a friends brother who had Down syndrome - he had (I'm guessing) a very mild intellectual disability, he was in mainstream school and I only knew him for about three years from when he was about 8. Anyway I interviewed and I got the position. As summer drew closer I became more and more nervous - I knew I had no experience with people with disabilities and actually felt quite awkward if I saw someone in a wheelchair etc and the job would involve total care - changing campers nappies, showering campers, feeding campers, bringing campers to the toilet, wiping bums etc.... the thought of which really grossed me out.

Anyway away I went to the camp with my friend, heartbroken that I was leaving my boyfriend of a month behind (we had a looooooong history) and regretting my decision to ever go to America (in fact the day we were leaving my friend and I were freaking out in my boyfriend's car and seriously considering driving straight back home). When we arrived there were lots of other Irish people there who would be working as cabin counsellors and for the first few days the international workers just got to know each other. That entire first week I was so miserable - I missed my boyfriend, there were only three computers for 100 staff, I hated the food, the list goes on....I basically spent the first few days crying or wanting to cry the whole time. This all changed as soon as we started training.

We had a week of training and were then launching straight into the camps. I was so so nervous about all the camps and about training because a lot of the other staff were nursing students and had backgrounds in total care etc. From the second day of training for the camps I knew that I wanted to work with people with disabilities for the rest of my life. This feeling continued - two weeks in I broke up with my boyfriend (not because I didn't love him - but purely because I was spending so much time thinking about my campers that I wasn't thinking about him at all anymore which made me feel horrible and it wasn't fair to him, we have since gotten back together by the way). I knew I had changed when I left my backpack behind at the art centre because I was so engaged in being with a camper - I know this sounds like nothing, but for me (who is always extremely careful of my belongings) I knew that I had completely forgotten myself and my needs for this camper. I tried to do everything for my campers (sometimes this wasn't possible because I am human and I am flawed but I tried to the best of my ability) - one of my campers asked me to go up the climbing tower with her and though I had always been terrified of climbing towers I did it without even thinking. The whole time I was with her I didn't think once how scary it was - I was just thinking about making sure she was ok and enjoying herself.

Never have I been more inspired than when I was at camp by the strength of people with disabilities - I saw people with physical disabilities who had pushed themselves so much that they were doing things I didn't know the human body could physically do, I met amazing people who had been through tragic home life situations but were still smiling and positive. Some of the campers were just so innately good - so caring - I can't even fathom it. There were times when you had to be so patient with some campers - maybe they took 30 minutes to tie their shoe, or it took a long time for them to understand what was happening - but it was so unbelievably worth it, especially when they would look at you and smile or ask you specifically to help them do something like to swim across the lake with them, or ask if you would go to the bathroom with them. There was absolutely nothing "retarded" about any of the campers - they were all amazing in their own right. People with disabilities are not "slow" or "stupid", they deserve the same rights and respect as everyone else. It's true people with disabilities may need extra support to do things that others can do without thinking about it but giving them extra support is not giving them "an advantage"- it is making it an equal ground for everyone.

Although I had learned about person first language from university but I learned person first thinking from camp. For those that don't know person first language teaches that  it's not "autistic person" - it's "a person with autism" - the disorder or whatever it is does not define the person. Earlier I said "shower campers, change their nappies, feeding campers" - it's not called that anymore - it is freshening up with campers, eating with campers, and it really is that; you don't feed a camper and then feed yourself - you eat with them so that you take a bite of your food and they take a bite of their food (even if you need to put the food on a fork for them). If they need to wear a shirt saver (a bib - though not a good term to use because it is associated with infants) you wear a shirt saver. That goes in with the principle of universal design - things are designed for everyone to use, people with and without disabilities. If you look at the social model of disability it says that people have disabilities because society makes it that way. Imagine a stairs - a person in a wheelchair can't get up it obviously, but if all stairs were replaced with lifts then that person in a wheelchair wouldn't be prevented from going upstairs and wouldn't have that as a "disability".

Also I need to put in here about how inspiring the other staff were, one in particular especially inspired me - she had the most amazing attitude and gave the most amazing speeches before camp started and something she said "choose your attitude" will stick with me for the rest of my life. Some of the staff had disabilities too which was amazing because it showed that having a disability does not have to limit a person. Also want to mention a girl I met over there who I was so close to after 5 days of knowing each other people were asking if we had met in secondary school or college. That girl also super inspired me - she was so selfless before even going to camp I honestly tried to change some parts of my personality (the vices like my selfishness etc) so I could be more like her.

When I came home after three months of being immersed in person first thinking and I heard someone use the word retarded I flinched. I don't think people can understand how disgusting that word is or how hurtful it is. When you use "retarded" to describe something silly your friend did it's comparing people with disabilities to stupidity. It is the exact opposite of what we should be trying to do - empowering people, allowing them to be independent with everything, developing proper self esteem and confidence. "Retard" diminishes all of it. I can't even describe it fully because I am not clever enough. I have directly copied something from Lovethatmax.com to illustrate my point as it does it better than I ever could (I know I should really just link the post to avoid copyright but I want to make it as easy as possible for people to read it).

This is the link I retrieved it from: http://www.lovethatmax.com/2013/03/dont-use-the-word-retard-or-retarded.html



It started with an experiment where I tracked the word "retard" on Twitter and asked people to reconsider using it. And I've continued to speak out about the r-word and how offensive it is, as have many parents of kids with special needs and others. It's been gratifying to hear people say that they have quit using that word. It's been hard to hear people staunchly defending their use of it or getting into passionate diatribes about semantics and freedom of speech. Sometimes, it seems as if the word might be engraved on people's tombstones, so fond of it are they: Here lies Cassie, devoted mother, loving wife, advocate for the word "retard."

Today is the fifth annual day of awareness for Spread The Word To End The Word, a campaign created by the Special Olympics. To illuminate why the word is so demeaning, why parents take it so personally and why this isn't just about a word, I put together a little quiz I hope you'll share. The prize for acing it: a lifetime supply of compassion, consideration and soul.

1. The word "retard" is another word for...
a) Loser
b) Pathetic
c) Uncool
d) Stupid
e) Clueless
f) All of the above

2. The phrase "That's retarded!" basically means...
a) "That's uncool"
b) "That's ignorant"
c) "That's ridiculous"
d) "That's pointless"
e) All of the above

3. And now, a three-step exercise. First, read this paragraph:

When Ann Coulter referred to President Obama as "the retard" in a tweet last October, Special Olympics athlete/global messenger John Franklin Stephens wrote an open letter to her. In it he said, "I'm a 30 year old man with Down syndrome who has struggled with the public's perception that an intellectual disability means I'm dumb and shallow.... After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult...."

Then watch this video:




Then answer this question:

If people with intellectual disability are offended by the word and consider it a slur, it's better not to use the word, right? 
a) I don't agree.
b) I think I'm starting to get it.

4. True or False:
• "Mental retardation" was once a clinical diagnosis. When the words "retard" and "retarded" became derogatory slang, however, modern-day organizations, doctors and schools quit using that diagnosis.
• In 2010, Congress dropped the terms "mental retardation" and "mentally retarded" in federal health, education and labor laws and replaced them with "intellectual disability"—and 43 states have passed similar legislation.
• I am a clever person who can come up with plenty of other words to use besides "retard" and "retarded" and "tard."

5. Logic section!

IF you had a child with intellectual disability, and you wanted to empower this child in a world where there is real stigma against people with disabilities, and you pray that he'll never feel like a lesser human being for having disabilities, MIGHT you want people to avoid using a word that perpetuates negative stereotypes?
a) Nope
b) I get it, I get it

6. If you're not yet convinced, consider this: You wouldn't make fun of someone who was deaf or  paralyzed—or use their disabilities as insults, would you? As in, you'd never say "Oh, my boss is such a quadriplegic!" So then...
a) It makes sense not to slam people with intellectual disability by using "retard" as a synonym for "loser"
b) I'm still not convinced

7. OK, then try this fill-in-the-blank sentence where you replace "retard" with another word, and see how it feels:

"She is such a [insert your name/your partner's name/your child's name/your mother's name] for dropping her iPhone out the car window!"

8. If you still insist it's fine to use the word as long as you are not actually making fun of a person with intellectual disability, then you are:
a) Missing the point
b) Missing the point
c) Missing the point
d) All of the above

9. In the last couple of years, when celebs and other well-knowns have dropped the r-bomb, some have publicly apologized. Take Lady Gaga, who used the word "retarded" in an interview then issued a statement that said "I consider it part of my life's work and music to push the boundaries of love and acceptance. My apologies for not speaking thoughtfully...."

This is a sign that:
a) These celebs feel badly
b) Their publicists have told them to feel badly
c) The word is a slur, so publicists consider it important enough to issue statements
d) Lady Gaga should do a song about why the word sucks
e) All of the above

10. This whole thing about people speaking out about the r-word: Is it about censorship, political correct-ness or freedom of speech? Or is it really about consideration, dignity and respect for people with intellectual disability?

a) It's really about consideration, dignity and respect for people with disability.

ANSWER KEY

Do the decent thing and use a word that doesn't insult people with disability, demean them and pain those who love them.




            That summer was the best of my life, and I feel like it will be the best I ever will have. Camp taught me so many things and completely changed my personality. While obviously I am still very flawed and selfish; camp really helped me appreciate so much about my life - it made me a much better person, honestly not one day has gone by where I haven't thought about my one of my campers, or the camp in general. That three months completely defined what I want to do for the rest of my life and the kind of person I want to be. I will never forget how much the entire experience meant to me and how precious every single person is - regardless of physical or intellectual disability. My campers may have forgotten me by this stage but as far as I am concerned they are my sisters and brothers and if someone says anything that seems in any way offensive to someone with disabilities you better believe I'm gonna have an issue with it. Retard, spastic, handicapped, disabled, any words like this or sentiments close to these words and I'm gonna lose so much respect for you instantly. In the 21st century there is no place for ignorance of this magnitude. People don't always realize what kind of an impact their throwaway comments can have - please, please spread the word to end the word or at the very least if you don't want to share it maybe you can just take the pledge yourself here - http://www.r-word.org/r-word-pledge.aspx



Thank you so much for taking the time to read this post.

10 comments:

  1. Sarah, this is an absolutely amazing post. You don't sound at all selfish, you sound like a normal teenager with little/no experience of disabilities! It's something that really annoys me too & I didn't realise there was a pledge or campaign against it. Good luck with your future job xx

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    1. Thank you so much!! I only knew there was a campaign because my friends from camp were putting it on their facebooks! x

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  2. Sarah such an honest post, you're such an advocate for people with disabilities. This definitely seems to be a topic which has slipped through the 'Politically Correct' net, thanks for writing this post and spreading the word about spreading the word...!! Really thought provoking :)

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    1. Yeah it's crazy how people think it's not ok to say some words but it is to say other equally offensive ones!!

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  3. Awww tahts was a lovely post Sarah, I've learned a lot x

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  4. Brilliant post, well done you :) I'm sure the campers remember you and have happy memories of that summer also :)

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    1. Thanks :) I hope they have good memories anyway :)

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  5. Amazing piece Sarah!! Thank you for been such an advocate for people with intellectual disabilities. I also flinch whenever I hear the word 'retard'. I trained in Kerry and 'retard or rehab' is actually a well known insult. I cannot stand it! as you know, I work as a nurse and I have to say I find it very hard and challenging to work with intellectually disabled people. Unfortunately I just don't think I have the level of patience you need to. I absolutely whole-heartedly admire you for wanting to and for loving what you are doing :) Brilliant post! :D

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    1. Ah I think I'd be the same with the little patience thing if it wasn't for the training we had - they did stuff where you actually experienced having an intellectual and physical disability! x

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Your comment makes my day :)