"My biggest problem is not that I am gay, but that I fall into the category of 'disabled'," says a man whose illness has confined him to a wheelchair
There can be countless reasons why people need a wheelchair. Can you first explain what the cause is in your case?
It's quite a long history, but I've been living with multiple sclerosis for over 15 years. I was diagnosed when I was 20 years old, after protracted delays when no one really knew exactly what was wrong with me. While the course of the disease varies from person to person, of course, and it is not universally true today that this diagnosis necessarily means a wheelchair, I already need one - though thankfully not all the time yet. Most importantly, it is a disease that is incurable, so medicine can only slow its progression and progression. There's much more to it, of course, but that would be a topic for a medical portal. (laughs)
So, leaving aside the medical news and possible future prospects, and focusing instead on everyday life: what do you struggle with the most in this area?
If someone from the outside were to judge this, they would surely immediately guess that it is the unhappy prognosis that is connected to my diagnosis. But you just have to deal with it somehow - and then you would like to live somehow plus or minus normal, after all there are more serious diseases than the one I suffer from. Of course, the condition will always be far from normal, but at least one can try. It's just that when you keep banging your head against the wall, figuratively speaking, it's exhausting and frustrating. I'd like to find a partner, for example, but I'm actually the walking - and often nowadays driving - diagnosis. As soon as I explain to a potential counterpart how things are, I basically stop being any kind of prospect. Plus, people in wheelchairs just aren't sexy and it's as if all intimate relationships are taboo for them.
Isn't this taboo also related to a certain "desexualization" of people with disabilities?
Absolutely, it's as if the disease and the wheelchair define the person. In fact, any partner who, after a moment's hesitation, decided to try it with me was perceived by those around him as a kind of Samaritan. Someone who took pity on me, someone who carried a burden in the form of a human being - me. It's absurd, though, that society mostly sees people with disabilities as completely useless just through them. We too can be an asset, we can live and work normally, but few people see it that way. And this may sound stupid, but I think that disability is a bigger stigma today than being gay. In fact, even when I told my parents I was gay, their reaction was...
In what way?
I spent most of my adolescence between four walls, either at home or in hospital, rather than with my classmates and friends. I've had various health problems since I was a kid, all culminating in multiple sclerosis. So basically, in our house, nothing but health was ever a very big topic. Over time, when I came to the realization that I was gay - and told my parents - they accepted it with a similar calmness as if I had announced that I was going out to the newsagent's for a newspaper.
Maybe it's a different set of values that can show people what's really important - and then they don't see a different orientation as a "problem"...
That's for sure, but it's a shame that it usually takes a watershed moment or prolonged exposure to a more extreme situation to somehow tip that value ladder. Yet it would be ideal if everyone was clear about those values without that - because I certainly wouldn't wish anything bad or breaking for anyone just for the sake of "enlightenment". On the other hand, everyone always took the fact that I'm gay pretty well in the end; in fact, I never had as much trouble with it as I do with the label "disabled" that's always attached to me.
Problematic dating aside, what are you running into because of your illness and related disability?
I bump into people... and I bump into them, even though I may not want to. (laughs) Multiple sclerosis, of course, generally brings with it a whole range of different health problems. These - apart from the gradual deterioration of movement - usually manifest themselves in so-called attacks and have a sudden form. There can be a whole wide range of problems, from problems with vision right through to weakness in the limbs, tingling, etc. In between attacks, however, a person can look quite healthy, even if they are not - but then they often face confrontations about whether they can really use the toilet or a disabled parking space and have to explain to complete strangers what is wrong with them. When I don't have a wheelchair, I look like almost anyone else, but even then I often need various forms of help. As I have already hinted, I am also clumsy, sometimes I drop something or bump into someone, but this can only be judged as recklessness by those around me. Yet even when I deny myself and start to explain my condition, I often get a questioning look and the response "hmmm, you don't look it"... Not that "looking it" is any kind of a win...
Is there anything that could change this situation in your opinion?
Awareness, on every possible level. If I were to use the different orientation comparison again, today you can find lesbians, gays, trans people, etc. practically everywhere, there are LGBT characters in the media, in TV shows and movies, equality for LGBT people is a regular political issue that resonates loudly in society. This is not true of disabled people in my opinion, we are often seen as "social parasites" somewhere on the sidelines who just receive various benefits. It is only when we are openly talked about, both socially and politically, that we can change the perception of mainstream society of us as people who, despite their adversity, have something to contribute to others.
