People With Disabilities On How It Is For Them To “inspire” Others

A life 2023
People With Disabilities On How It Is For Them To “inspire” Others
People With Disabilities On How It Is For Them To “inspire” Others
Video: People With Disabilities On How It Is For Them To “inspire” Others
Video: People With Disabilities Can Succeed Video | RaffertyWeiss Media 2023, February
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In 2012 Australian comedian and activist Stella Young gave a TED talk about how stories of people with disabilities are being used to inspire people without them - often against the wishes of the former. Young's expression "inspirational porn" has made its way into blogs and the media. The fact that not all people with disabilities like being seen as heroes of uplifting stories came as a complete surprise to many. We asked people with disabilities themselves how they perceive such situations.

THE TEXT USES VOCABULARY, which the heroes themselves use in relation to themselves, for example, the word "disabled". Some people choose such a self-name in order to draw attention to the stigmatization of the word and rid it of negative and offensive connotations.

Interview: Ayman Eckford

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Alena Levina

Artist, curator, feminist activist covering the issues of women with disabilities. Member of the “Women. Disability. Feminism". Project coordinator #invaprotest

I have progressive muscular dystrophy Landouzi - Dejerine. Since 2017, I have been using an electric wheelchair for a wheelchair. I am missing some of the muscles in my legs, torso, arms and face. Until the age of twenty, I did not feel severe problems due to the disease, but by the age of twenty-five or twenty-seven it began to progress dramatically and limited me in everyday and professional activities.

Before I got into the wheelchair, during my studies at the institute, I was regularly told: "Alyona, you have such willpower!" - although I just came to the university, studied and lived, like everyone else, a carefree student life. When I got into the stroller, there were more derogatory and approving "compliments", how incredible I am. And with a touch of paternalism - they say, what Alyona is a wonderful girl, although I consider myself an adult, accomplished woman. I am a very tough and often uncompromising activist, and there is no miracle in this - only sacrifice, stubbornness, fanaticism and the labor of a convict.

In my regular work, I work remotely, and often my employers are not aware that I have a disability. Now I am looking for a full-time job in the office and foreshadow all the possible reactions. Before my health deteriorated, I was a workaholic, and I remain so now, only painkillers and other drugs were added. On the contrary, I often hear from my relatives that I “hide behind my disability”. Or here: “If it were not for Alena's nerves, she would have achieved a lot” - the words spoken by a brother who does not have a disability, which my mother carelessly conveyed to me. So I “inspire” someone with my disability, and someone I “annoy”. About other women with disabilities, I often see comments like “Despite the wheelchair, you are still a real woman” and other sexist, stereotyped statements.

When faced with the statement about “inspiring disabled people,” I don't feel anything positive. I love to be praised for ideas and actions that work effectively. Or when women with disabilities turn to me for advice on which wheelchair is better for our disease. But on the whole I am a very simple person, and all this flair of overcoming that others see only annoys me. I have an art project on this topic - "The Miracle of Healing by Art": in it, overcoming pain and difficulties, I get out of the wheelchair to take a picture against the background of the masterpieces of art. It's irony. I do not believe in miracles, as well as in the fact that a person with a disability can, should inspire - this is the exploitation of the life and problems of people with disabilities.

So google more instead of making round eyes at the sight of a person with a disability. Watch memos about eiblist vocabulary, videos in which people with disabilities tell how their life works.Do not go with help when they are not asked, and help when they ask for help. Fight for a barrier-free environment - write on the portals of the district administration or councils so that they cut curbs where the wheelchair should pass, let blind people with a guide dog into all public places. Check your privileges. If possible, volunteer at the House with a Lighthouse children's hospice or adult hospices. Visit people living in neuropsychiatric institutions with experienced activists. Subscribe to the community “Women. Disability. Feminism”in all available social networks and follow the #invaprotest project.

Victoria Rodriguez-Rolden

Autistic person with bipolar disorder, human rights activist, disability and LGBT rights consultant, disability policy consultant

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I work in Washington, and my job forces me to meet people who are making important political decisions. Once I spoke with the head of the office of one of the congressmen, and the conversation turned to "these people." The woman began to talk about "especially dangerous people with schizophrenia and bipolar disorder." Then I asked her: “Are you talking about people like me and my wife? We both have bipolar disorder! " The woman, of course, began to deny, apologize, say that she did not mean it, but I know that it is not so.

This incident is linked to other stories where people constantly repeat how brave and inspiring I am. In both cases, stereotypes about disability and a complete lack of understanding of what it is are at the heart of it. People say that I inspire them with my courage and openness - by courage they usually mean not my activity, but the very fact of my existence. But I just live my life, there is nothing inspiring about this fact. I didn't even decide whether to be born and how much the world in which I would be born would be adapted for people like me. People who talk about inspiration see the picture in a very simplistic way, not really understanding the good or bad aspects of my life.

Before talking openly about disability, I was already open as a transgender person. After the transgender coming-out, it was easier to disclose my invasion status, and I decided to make it known to everyone, because I wanted to use my education, connections and other privileges to defend the rights of people with disabilities, speaking in the first person.

Once again, the problem with "inspirational porn" arose. People from all backgrounds - politicians, health professionals and others - have used my speeches and consultations to ask me very personal questions. This is also somewhat "inspirational porn". Rather than referring to me as an expert, I am asked questions like "What pills are you taking?" and "How often have you wanted to commit suicide?" This is very unpleasant for me. Firstly, because these people do not see my boundaries at all, they do not see a person in me, and secondly, because I did not receive a legal education for that and tried to become a good specialist so that I would be ignored as a professional.

Of course, anyone who asks such questions could easily find information on the Internet about the experiences of other people with disabilities. But as soon as they see me, they begin to perceive me as an exhibit to study, as a story that can be inspired, and not as a person. They ask me to tell how I overcome difficulties in order to feel better, more capable of something, and not because they really care about the experience of disabled people. They say that I am "inspiring" to convince themselves how cute they are, how good they are, how they help "unfortunate" disabled people. It's like hiring someone with a disability just to be seen as virtuous philanthropists, or helping someone with a disability so they can film it, tweet it, and get everyone's admiration.

The problem will not go away until society learns to see people in its members who have disabilities. Inspirational porn serves to dehumanize, but it is also part of a larger, systemic problem. It is important for people without disabilities to understand that those who have it are people, not a subject for inspiration and self-esteem. They should understand that we are no less worthy than them, that we also have boundaries and our own lives. After all, in the end, any of them can also get a disability.

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Asya Cherepkova

Artist

Nobody really knows what happened to me. I was born healthy and developed well - as my mother says, I even tried to walk. At seven months, I was vaccinated with DPT (adsorbed pertussis-diphtheria-tetanus vaccine. - Approx. ed.), after which I miraculously survived, but remained paralyzed. The point is not that vaccines are dangerous in themselves - it was an individual reaction to a likely substandard medical product. This happens, just very rarely (in the list of adverse events that the DPT vaccine can cause, pain and swelling at the injection site, fever, malaise, febrile convulsions; the connection with more severe events has not been proven. Approx. ed.). I was diagnosed with cerebral palsy (infantile cerebral palsy), although some doctors disagree with him: I am not suitable for a number of reasons.

I have never singled out disability for myself - I did not even think that it was worth thinking about it. I cannot walk, move independently and take care of myself; of all the limbs, only my left hand works. But it never got in my way in my life. Since childhood, I have been in society. The children adjusted all the games to me: for example, we played catch-up with my mother, she took me, and the children ran away or followed at a step - so that I could really catch up with someone, but without succumbing. I don’t know what my disability would seriously interfere with. Yes, I really wanted to go to kindergarten and school, to become a veterinarian - but the fact that this did not happen never made me suffer to the core. I just tried to pave the way for what I want, look for solutions and arrange everything in the best possible way.

When they told me that I was poor, because I couldn't do something, I was very surprised: why can't I? In those cases, when I really could not do something, I wondered why it was this factor - the fact that I could not do something - that would make me unhappy. People cannot do very much. For example, flying - but because of this, no one curses his life.

I have a positive attitude to the word "disabled". It doesn't touch me at all when they call me it, and I don't look for a refutation of my essence in dictionaries. This is another fact that describes me - like height, weight, size of clothes, the fact that I am an artist and do not smoke. “Disabled” does not negate the fact that I am beautiful, smart, and in no way demeans my dignity. This is a set of qualities that must be considered in order for me to exist safely in the world. I need ramps, constant help and equipment. As it is, it is neither bad nor good. Something like the fact that the overwhelming majority of the world's inhabitants need to get up and go to work in order not to starve to death, wash in the shower and dress warmly in winter. But it would be so nice to be a divine creature that feeds on prana and generates heat, which burns all adhering dirt and warms not only oneself, but others as well! But alas.

When they call me "inspirational," I don't mind. I don't care, or rather, I'm even for if I can help someone, even if just by my example. It looks like a kind of pride, but as a child, I myself was looking for a similar example - not even for motivation, but simply so that they could tell me how to live if you are. The examples were classic and sad. So I grew up and created a blozhik - in case my experience helps someone. If my example helps someone to solve their problems, even if they are completely different from mine, why not?

As for my life and how much it is similar or different from the life of the majority, it cannot be called standard and simple. You need to calculate and calculate a lot in it, and a good combination of circumstances is very important.

I also take advantage of all the benefits and bonuses, for example, if there are long queues at the post office. Not because I'm so royal in a wheelchair. It’s hard for me to sit, and I don’t get into every vehicle. If in line I want to use the toilet, I can hardly use even a bush. Actually, for this, they came up with a rule that we pass out of line - and not because we are such deprived poor fellows, let us at least rejoice at this.

It is foolish to deny that you cannot do something. It's foolish to try to be like everyone else. If you are disabled, then you are no longer like that. But this does not mean that you are not worthy of something - just as the fact that it does not make you by default worse or better than others. In my opinion, you can successfully live any life only by accepting yourself to the last word. Even if this word is "disabled".

Anonymous

Blind person, LGBT activist, non-binary transgender person

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I think that any disability affects the life of the carrier enough that he noticed the difference between himself and those who do not have such (or at all) disabilities. As soon as I got older and could afford to be independent, including moving around without an escort, I realized how unadapted the world is to my needs. Even before becoming an LGBT activist, I was an invaactivist.

I never thought of myself as a boy or a girl - in my head I was just “me”. Then I found out that there is a name for this, and it became easier for me to explain who I am to other people. But this also closed for me a lot of contacts with former acquaintances who simply could not fit me into their picture of the world and told me about it, not caring about tact and respect. I, in turn, realized that I was not ready to pretend to be what I am not, for the sake of maintaining contacts with these people - my nerves are more expensive. Unfortunately, I stopped working in the field of invaactivism as much as I would like: the community of the blind in Russia is very close, and I am sure that I cannot come there as a transgender person yet - it is simply unsafe. My non-disabled transgender friends are having a terribly difficult time, and I'm also too noticeable to allow myself to inadvertently shine. It's dangerous to be too unusual in Russia if you don't know how to defend yourself perfectly. I'm just scared.

That I am "inspiring" I learned at school. This sounded from almost everyone who did not have a long experience of communicating with people with disabilities: I am such a fine fellow, I am so smart, so diligent, so all sighted children, all people, could learn from me. This refrain, which has been ringing for years, gradually became annoying. Moreover, in my opinion, I lived an ordinary life, did not get involved in adventures, did not have enough stars from the sky and was generally far from the hero whom, it seems, they saw in me. A good performer who solves the assigned tasks, but by no means a hero or a genius. I still think so.

I'm not sure, but it seems that people without disabilities (at least in Russia) still have a very conventional idea of ​​the life of those who have disabilities. Few real facts and many well thought out forms the idea that many of us overcome ourselves every day. This is not always the case. For example, I have a pretty ordinary life. There are difficulties, it's true. And then there are good friends, a computer and a smartphone, e-books, a guide dog. This is all great. I like living the way I live, and I would not want to be an inspiring example just because I live in the conditions in which I fell. This is somehow unfair.

Also, I think this whole inspirational idea is somewhat artificial and makes things worse. People not only don’t know the realities of life with a disability - they don’t seek to learn them. A wall forms between us.I feel uncomfortable, as if I was on stage, but I'm not ready to perform, I have no written speech and I do not understand at all why we are all gathered. I would like to break this formalism and find myself in the same position with people like you.

For example, all my school years they told me that I was an angel and a sun. At the same time, the quality of education turns out to be poor. We are told that we are "inspirational" and are made to study indulgences. Then it turns out that regardless of our grades (I know for sure that my classmates and fellow students from school had such a problem) less knowledge than people without disabilities with the same level of education - I mean the knowledge necessary for admission to a university or school. And people with disabilities also need an accessible environment.

Finally, people without disabilities are also responsible for an accessible environment, education and employment for people with disabilities. The whole situation with inspiration affects the fact that neither the accessible environment, nor education, nor employment in our country work normally - everywhere we have to invent our own "crutches". As a result, people with disabilities receive a lot of words about inspiration, but there are no conditions for a comfortable life. It's nice, of course, to feel like a hero, but it seems to me more preferable to get a quality education, at least some decent job opportunity and a decently adapted environment around.

PHOTOS: NeoLeo - stock.adobe.com (1, 2, 3)

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