In October 2007 I initiated a series of disability awareness designs. It was inspired by a friend, Anke, who is disabled due to a genetic disease, FA – Friedreich ataxia (this is also called FRDA or “Hereditary spinal ataxia”). “Ataxia” means disorder, lack of order in Greek. The Friedreich Ataxia is a rare genetic disease that damages nerve tissue, causing a loss of muscle coordination, muscle weakness, scoliosis, impaired speech, and sometimes even cardiomyopathy and diabetes – not all affected people have the same symptoms. This disease only worsens over time. When I met Anke for the first time, I saw an attractive, young girl with an enormous smile on her face, positive life philosophy, beautiful eyes, witty, with an active social and love life, and all this being confined to wheelchair. Imagine how I felt when she told me with her big smile and sparkling eyes that her disease is getting worse every year and that she can do nothing else than accept the shitty situation. I could just not accept this, how could life be so unfair?
Anke got a copy of the defective gene from both her mom and her dad, but none of them and nobody else in the family has the disease: this is called in genetics an “autosomal recessive genetic disorder”. Both parents have to carry the defective gene so that it is transmitted to the child, but the parents don’t necessarily have the disease. The first symptoms appeared when Anke was five years old and started getting really bad when she was about 10. She is in wheelchair since she is 15. She says that the disease is very related to her psychology: if she is doing well, if she’s happy and cheerful, then the symptoms of the disease stop getting worse – she even says that the symptoms recede if she’s in a good mood – to return when she’s psychologically down.
Anke wished to become a nursery-school teacher and finally received a training post four years ago. She started her training, but during all her training time, her disability seemed to be an obstacle (not for her, but for all others!). Children loved her and had a very good relation to their teacher in training, but Anke’s trainers and colleagues could just not accept her, they put her in psychological pressure and “advised” her to stop her training – well at the end they achieved it! Anke was not given the opportunity to follow her dream. Last time I talked to her, she had a new job in the social sector – helping and advising other disabled persons. She has her way of bringing “sun” into people’s life…
So why did I start creating these disability awareness designs? I think because disability is one of my big fears and I just wanted to get a bit closer to the wheelchair lifestyle and understand it, I wanted to fight my fear. I wanted to be integrated to the wheelchair community – people normally talk of integration of the disabled in the “normal” community, but why not the opposite? I could not deal with her disability and I told her, I wanted – and still want some times – to avoid it. This fucking disease is too harsh for me – more than for her I think, because she’s just used to live with it, it’s not a question for her any more.
Anke invited me to protests and activities related to disability rights and wheelchair lifestyle – it was like a new world was opening to me. Wheelchair jokes, a mother in wheelchair with a baby in her arms, a non-disabled boy sitting on a wheelchair girl’s lap and kissing her… I learned that disabled women sometimes have trouble being accepted as “women”, with love needs, sexuality, sex appeal, motherhood need etc… Non-disabled men mostly consider them as asexual objects. Those questions made me think a lot and i started creating some designs related to the disabled women rights and to the community acceptance of disabled women’s role as women. I think that Anke does not like my designs, anyway she would never wear them. She never said this directly but that was my impression. But anyway I continue creating them – you can say I’m doing this for me, not for her, but it’s true the fact I met her inspired me all this.
The first design I created was in pink-red, showing a mother in wheelchair with her infant in her hands with the slogan “100% woman” and the “feminine” sign attached to her wheelchair. Raising a child must be very challenging because simple tasks are time consuming or difficult for parents with a disability. I wish disabled parents could write here some of their experiences. It might seem unbelievable to most of my “non disabled” readers, but women in wheelchair can and have the right to give birth to and raise children and they do it very well; society could make this a bit more accessible to them, but they already do it very successfully.
Another variation of this design is “My mom has wheels! Yours?” – I put it mostly on baby clothing and it’s the exactly same woman+child design with the new slogan. I read that kids of disabled parents use their mom or dad as a “private taxi” at home and love “taking a ride” on the wheelchair, that’s where I got the idea. I also created the same for disabled dads, with the slogan “Take me for a ride, Daddy!” – I even put a small flame on the wheelchair! I am sorry if sometimes I make more designs for girls and women – I have nothing against you boys, it’s just that my inspiration (Anke) is … a woman!
Then this week I created a couple of new designs – I was looking for new, funny slogans. I believe that humour helps people get together. A person in wheelchair “breaks the ice” by wearing a funny t-shirt. At least I see it that way. The shirt results in comments, discussions… It’s an easy way to start a conversation with people you don’t know so well. A person in wheelchair wearing a funny tee shows a positive life attitude and people don’t dare to feel “pity” towards him. I’ll mention the words of a mom in wheelchair, Lorraine Hershon from Northumberland, UK: “When you become disabled you think your life is over. Believe me the interesting bit has only just begun!”.
I put this sexy girl silhouette in red on a wheelchair and added the slogan “Physically Challenged and Sexually Challenging” – a word play. The accent here is in questions like beauty + disability, body perfection + disability, sensuality + disability, sexuality + disability, love + disability, romance + disability, relationships + disability… Same with the next shirt, this is my favourite one, “I’m too sexy for my wheels” – I came up with this funny slogan yesterday and wanted this time to depict the girl not sitted on the wheelchair. So I used the silhouette of a sexy girl on the floor and put the empty wheelchair in the background.
If you are a disabled person reading my blog, please leave me your comments: let me know what you think about these designs. Do you find them funny? insulting? stupid? indifferent? Do you think they could make nice gifts for wheelchair girls? or for disability advocates? for disabled parents? for kids of disabled parents? I need your help to improve them, because I am not myself in the situation and I can just see the surface of your everyday life…
Here you will find some more information about Friedreich Ataxia: