I am living in a situation most people fear. Living with a debilitating disability from the age of 15 is not the ideal, in fact chronic illness seems to be people’s worst nightmare. Yet I am happy and content with my life; even proud of it. Nobody has any right to assume my life is anything less than that. Nobody has any right to pity me.
I’ve been diagnosed with Friedreich’s Ataxia for seven years now, one of the first lessons this taught me was that the media and subsequently society treats disabled people as young and innocent, I read a lot of books and watched a lot of films and couldn’t find myself represented anywhere. I was constantly told by people that they were “so sorry”, which over time, knocked my confidence and I began to believe what I was hearing, that my life was sad and deserved to be pitied, I quickly began to assume the role of being helpless. It is much easier for us all to believe that sick people are naive and unaware of the severity of their situation, and therefore less affected and suffering less. Just imagine looking at someone with a debilitating chronic illness and seeing them as a complex, intelligent human being who understands the reality of their situation and more than that, wouldn’t change a thing. If you can’t do that, it says a lot more about you than it does about me.
In these last seven years I have realised people have strange ways of addressing my disability, but the one that stands out the most is being patronised. For example, people speaking VERY slowly to me or simply ignoring me and just speaking to the person I’m with. I believe that this attitude is not a direct consequence of the lack of awareness for my condition, but more related to the way people choose (consciously or subconsciously) to frame disability in general. This framework was crucial to me understanding why people think it’s okay to pat me on the head and congratulate me for getting out of bed in the morning.
I used to shy away from identifying as disabled, I didn’t want to associate with the stigma attached to it. This is not surprising, as it was drilled into me that this was a negative word. Recently, someone who knows me quite well made the comment that “if it wasn’t for your wheelchair you would look normal”, a similar backhanded compliment to “you’re too pretty to be in a wheelchair”, which I have also received. The truth is, disabled is not a slur, it is not offensive, and it has no bearing on how I look. It is just another word I can use to epitomise who I am, as simple as small or stubborn. It has taken me longer than I care to admit, to realising that instead of rejecting the word disabled because of its negative connotations, it is much more empowering to reject the negative connotations society places on disability.
The western world is obsessed with change, making improvements, modifications and advancements. These are all buzz words we hear on the daily. Yet as a society, we dismiss disabled people. Innovation does not come from a perfect person living a perfect life with no challenges. Innovation is what happens when we listen to those who live differently to the norm, who deal with things the average person can’t even imagine. Which is why people with disabilities have much more to contribute than we get credit for. A few of my best friends have the same condition as me and they are some of the most resilient, intelligent, adaptable people I know, and the world would benefit from listening to them. After all, change is mandatory, but survival isn’t.
Friedreich’s Ataxia is a multidisciplinary disease, meaning there aren’t many parts of me it doesn’t affect. Despite this, the worst ‘symptom’ of my condition is not my heart condition or scoliosis or fatigue or all the other grim affects you can find on google, but how other people treat me. It’s a strange concept that because of my physical condition I have to fight for people to treat me with the same respect they would any other stranger, but there is a fine line between changing how the majority think about those with disabilities and shrinking myself down so that people don’t feel awkward around me. The latter is something I refuse to do...
It is not my responsibility to make others feel comfortable about my disability.
Would you like to write a guest blog for our #RareYouthProject? Please contact Catherine at email@example.com
For more information about Friedreich Ataxia
#RareYouthProject logo design competition is an exciting opportunity for our young rare community to show off their art and design skills to create a magnificent new logo for our #RareYouthProject and magazine. The competition closes on 26 April.
#RareYouthProject is all about empowering children and young people to have their RARE voices heard.
We want the new logo to reflect the youth that it represents by being created by you, the voice of RARE youth.
Guidance for the competition
How to enter
Emailed submissions to: firstname.lastname@example.org
Postal entries: Rare Revolution Magazine, Office 54, Kent Space, Letraset Building, Wotton Road, Kingsnorth Industrial Estate, Ashford, Kent, TN23 6LN
Deadline: All entries must be received by the 26 April 2019.
Noonan Syndrome can make me sad sometimes because I am different to other people but I have got to meet lots of other people with Noonan Syndrome at our families days which makes me happy and thankful for being able to meet with good friends that are just like me.
My family which are my mummy, daddy and my two brothers Josh and Finlay are my sidekicks and they always push me to try anything at least once. I say that my Noonan syndrome is my super power like superman gets his power from the sun.
Last thing I would like to say is for the Doctors to keep asking questions and looking for answers so we can get the help we need so we can continue to thrive.
Don't forget to be kind and keep smiling!!!!
The team behind ToyLikeMe campaign have been celebrating as Mattel the makers of Barbie, have announced the creation of a wheelchair using doll and prosthetic limb Barbie.
The #ToyLikeMe was established in April 2015 by journalist, Rebecca Atkinson, and parents of children with disabilities who were tired of not being able to find a positive #diff:ability representation in toys. The group started to makeover toys to give them #diff:abilities and invited followers to send in their creations. The results went viral and have been shared and viewed millions of times.
Congratulations to all the team behind the ToyLikeMe campaign for raising awareness and campaigning to make toys inclusive. It is great to see global brands including Mattel and Playmobil producing toys that positively represent disability.
Katrina Brooks aka Katty created her website Kattysterritory.com
Award for Perseverance and Commitment: Rowan Wallace
(Presented by Rebecca Stewart)
This award was presented to a person, who was wholly committed to their role and it was their determination in contacting high-level politicians, celebrities, and key industry companies that resulted in interviews with Scottish Party leaders (such as First Minister Nicola Sturgeon) and was responsible for bringing the project to the attention of SOBI who the became one of the sponsors for this project.
Award for Professional Excellence: Annabelle Hover
(Presented by Sarah Gilbert)
This award was presented to a #RareYouthProject team member in recognition of her outstanding professionalism. She had carried out fantastic research, she had made thorough preparations for each assignment and met every deadline that was asked of her. This person didn’t let their condition get in their way and has been a most inspiring example . Congratulations Annabelle!
Award for Outstanding Knowledge in their field: Cameron Dixon.
(Presented by Richard Lynn)
This was an award to highlight this person’s exceptional knowledge of their subject. The knowledge and enthusiasm of politics and history is sensational, and they impressed everyone they met. It was an amazing honour to award this to Cameron. Congratulations!
Creating Communities award: Charlotte Thom
(Presented by Tamara Howard)
We were proud to present this award to Charlotte Thom in recognition of her contribution to our youth communication strategy. Her guidance and input in ensuring our messaging was right was fundamental to the success of social media communications this far. Her ability to work entirely independently has meant that she was a valuable member of our team and we are thrilled that we got to work with such an amazing, unforgettable woman who has inspired so many.