Walking differently but dreaming alike

Tuesday, March 23rd, 2010

People with disabilities often have to struggle to find their identity and fulfill their dreams and life goals. In fact most people, abled-bodied or not, struggle with the exact same thing all their life. Of course that struggle does get tougher if you have a physical disability. But people with disabilities just want the same thing that non disabled people want: fulfill their dreams.

Size: The original (digital file) is 90x80cm (35.4×31.5 inches)
Technique: mixed media (photo, pencil drawing, paper collage, photomanipulation)

Walking Differently but Dreaming Alike by Ina Mar
Walking Differently but Dreaming Alike by Ina Mar

The model, Anke-Maria Sander suffers from Friedreich’s Ataxia, a degenerative, genetic, neuro-muscular disease, for which there is no cure. She uses a wheelchair since she was 15. Anke is my inspiration and consultant for this disability awareness series.

P.S. Sometimes abled-bodied people need details of suffering, in order to recognize disability. I portray disability in a way that it is not directly visible. The girl is not IN the wheelchair, I don’t show her deformed legs or any of the barriers she confronts every day. I do this in purpose. I don’t think I have to satisfy people’s need for horror scenes in order to accomplish more understanding for people with disabilities.

Britain’s Missing Top Model is missing some key points

Thursday, December 3rd, 2009

I was reading this article by Alessandra Stanley, “Disabled, and Seeking Acceptance in Fashion” (Published: December 1, 2009), about “Britain’s Missing Top Model”, a reality show on BBC America, that pits disabled women against one another to compete for a photo spread. I was absolutely appalled by two quotes:

First stupid quote – powered by stupid people:

Mr. Phang says to a photographer, “It’s kind of nice working with deaf girls because there’s not those sort of irritating questions.”

I thought I had an eye problem and had to read it again and again, until I was convinced: yes, he really said that! yes, they published it too! yes, he is still a public person! If you can’t deal with the disability of a person, just ignore it, step on it, make fun of it, use their disability to profit at their expense! Hurray!

Dear Mr. Jonathan Phang, is it that she can’t bother you with irritating questions, or is it rather that you don’t bother listening to her, or don’t know sign language? Mr. Phan, you just gained a solid place in the disabled community! You have two disabilities: your enormous imbecility and your uncomparable insensitivity! I am just wondering something, Mr. Phang: Every disability has their advantages. If the deaf model, Kelly Moody can’t be bothered with your irritating fashion nonsense-advice, she can just discretely turn off her hearing aid (oh yes!  can you “shut down” the models’ irritating questions? nope!). And I love going shopping with my friend Anke, because I don’t have to carry anything, I just put everything on her lap or hang it on the wheelchair! That’s so practical… So what’s the advantage of your intellectual disability, Mr. Phang? It must have some advantage… Feel free to twit me the answer @Ina_Mar

Second stupid quote – powered by stupid people:

Rebecca’s disability didn’t cause me any problems,” a photographer says after shooting Rebecca, 27, a stunning brunette who was born with a deformed hip and wears a prosthetic leg. “It was just the fact she’s not really in shape. Most models are pretty toned, slimmer, more agile.”

This reminded me of what this disabled friend, Anke, once experienced. A model agency refused her application. Because of her disability, they reasoned, she would much more easily get tired and would not be able to handle the stress of the job. Yes that is true. Anke has the Friedreich Ataxia and sometimes the physical limitations of the progressively handicapping neuromuscular degeneration of this genetic disease turn simple everyday cirmustances to … just tiring ones. But why are they comparing her to an abled-bodied model? I’d love to quote Disability Bitch here, a disabled BBC journalist: “It’s not just that I’m lazy, although I am, it’s that it takes me all the energy I can muster to wobble to my local coffee shop on the end of my walking stick. The fact I can only go such a short distance before collapsing into the nearest sofa demanding painkillers, does not make me a lesser person than the ones who drag themselves up mountains. I know what I can and can’t do and I know how to not do it in style.” (Disability Bitch hates disabled mountain climbers, BBC, 22nd October 2009).

Dear “Britain’s Missing Top Model”, dear photographer who pronounced these words, please decide: What are these girls? Where do they belong? Are they models? Are they able-bodied models? Are they disabled models? Are they beautiful disabled girls? Are they just girls representing the beauty of disability? Set the rules of the game. Then judge them according to those  rules.

If they are disabled AND models, “toned, slim, agile”, why aren’t they in the normal model show?
If you’re not judging them as “models”, but rather use them to raise disability awareness, then you can’t expect from every girl in wheelchair to be “agile”. Some are, some are not. You can’t expect from every deaf girl to speak absolutely clearly in front of the camera. You can’t expect from every girl with amputated legs to walk elegantly on high heels. Some can, some are still trying to, some cannot.

Did you create this show to prove that disabled girls can be skinny too? Or to prove that disabled girls can be beautiful, sexy, witty, successful, and that they should follow their dreams?

Did you create this show to prove that the modelling industry is not so closed and narrow minded? I don’t know if that aim is succeeded… Where are the fat models? Or just the normal ones? The unconventionally beautiful ones? Those that don’t follow today’s unrealistic beauty standards? There are some stunningly beautiful disabled girls who might not be able to roll their own wheelchair, or walk without their assistance dog, or reply to journalists’ questions. Where are they? Were they “too much” for the general public?

Why do you call them “missing” models? Call them “models with missing parts” or “models with missing abilities”, but the girls are not the ones who are missing! They are in wheelchairs, on prosthetic legs, blind, wearing cochlear implants, but they’re out there and living!

DSCN0076b

I’m too sexy for my high (w)heels

Tuesday, November 10th, 2009

My disability awareness design “Ich bin zu sexy für meine high (w)heels” (I’m too sexy for my high (w)heels) won the first price in the Zazzle Germany Humor T-Shirt Design Contest!

Ich bin zu sexy für meine high (w)heels

The same design exists in English and Spanish:

I'm too sexy for my wheels demasiado sexy para mi silla de ruedas

If you wish to buy this design on t-shirt, mug, bag or other, just click on the picture.

Some reading:

Hysterectomy on disabled girls? Disabled but above all women!

Friday, February 1st, 2008

Today I read about a disability right issue, the story of a teenage girl from Billericay, Katie Thorpe, 15, with cerebral palsy whose parents wished an hysterectomy for her (this means have her womb removed). The parents insisted that a hysterectomy could improve the girl’s life quality, that it would “protect her from the pain, discomfort and indignity of menstruation”; that if she gets her periods, this would “confuse her and cause her indignity” and that for these reasons there was “a real need for Katie to have this necessary evil taken away”. The disabled girl is unable to give or refuse her consent because she cannot talk! Fortunately, the hospital refused to carry out the operation (The Guardian Article, BBC News Article) and said that there was no adequate clinical reason for a hysterectomy.

A young girl with cerebral palsy, Emma or “Wheelchair Princess“, writes in her blog: “I am pleased by this development but saddened that it’s not made more of a splash in the news – it’s HUGE. I also want to note that I think this equality issue becomes more and more of a feminist issue too as the stories come out. We’ve still heard nothing about boys having their growth halted prematurely or puberty prevented due to disability – but I’m sure we will someday and that they’ll be more of an outcry than there has been for Katie and for Ashley. Cos they aren’t just disabled, they are girls too.

Short note: “Ashley” (or “Ashley X”) is a young Seattle girl with physical and learning disabilities who illegally underwent a hysteroctomy, mastectomy and appendectomy in 2004 (her uterus, breast buds and appendix were removed), because her parents wished to prevent her from growing up sexually; they kept their daughter immature, so they can continue to care for her at home – “for her benefit”. The operation is known as the “Ashley Treatment”. More information in Wikipedia.

I agree that being a woman is far above disability and Katie, Ashley and every other disabled WOMAN, should have the right to decide things that concern their own sexuality, their body, their future life, their future happiness. They should retain the possibility of having sexual relations and bearing children, of taking the pill if they do not wish or if they (for any other reasons) should not have a child. What is “indignity” and “necessary evil” – menstruation / sexuality? or rather hysteroctomy? And for who is it causing indignity – for Katie or for her parents? Aren’t the parents projecting their OWN needs and their OWN wishes in thoses phrases?

I am an “abled-bodied” woman, but above all I am a woman, and I can imagine what it could mean to have your uterus removed and to lose the possibility of having a child! I’ve also read that hysteroctomy can cause lowered sexual desire and decreased pleasure. This is really scary, it’s an irreversible operation with irreversible psychological pain and irreversible results! If doctors had agreed to carry out the Katie hysterectomy, this would have been a human rights infringement and at the same time a women’s rights infringement.

Some reactions and comments I read about this issue show how ignorant the majority of able-bodied people are; disabled women CAN have children and can be great parents; the right to have a family cannot be taken away from them just because they were born disabled! They should be given more support to achieve it! A mentally ill woman has the right to bear children because she is physically healthy – then some of those mentally ill mothers kill their kids, abuse them or abandon them – but they still have the right to have children! Nobody came to the idea of removing the wombs of a mentally ill mother! A physically disabled woman who is caring and mentally healthy should have every right to have children and to receive every possible support to overwhelm the every-day difficulties that her disability is causing her.

I knew that many women have to undergo hysterectomy because they have cancer, or chronic pelvic pain, or fibroids, but I didn’t know that hysterectomy is now used to treat … disability! I didn’t even know disability was a disease! Hear, hear!

DSCN0080b

Recognize my disabilities, emphasize my possibilities

Thursday, January 31st, 2008

A true friend knows our weakness but shows you your strenghts
feels your fears but fortifies your faith
sees your anxieties but frees your spirit
recognizes your disabilities but emphasizes your possibilities

~ William Arthur Ward

I discovered this inspirational saying. William Arthur Ward (1921 – 1994) was an American author and educator. I used the last part of the quote to create a couple of disability awareness t-shirts:

Recognize my disabilities, emphasize my possibilities

Recognize disabilities, emphasize possibilities

New Disability Awareness Designs

Friday, January 25th, 2008

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.

100% WomanThe 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!

Physically challenged and sexually challenging girl in wheelchairThen 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’m too sexy for my wheels” - Sexy disabled girl.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: