“Sometimes I am proud to have dressed at all and some days I manage a lot more. In my situation, you should basically be proud of the little things already, otherwise you will mentally collapse.”
This interview is about Nex and about the topic of physical impairment.
Since the age of seven, Nex has suffered from a rare metabolic disorder that causes muscle spasms, chronic fatigue, word finding and concentration problems. Chronic fatigue is a severe neuroimmunological disorder that often leads to a high degree of physical disability. In English, the term Myalgic Encephalopathy (ME) is most commonly used, but the term CFS/ME is now also used. Many CFS sufferers also suffer from pronounced pain such as muscle pain, joint pain and headaches. In addition to chronic fatigue, severe sleep disturbances persist. Rest breaks often do not help to eliminate the fatigue. Even after physical or mental exertion, there is an increase in symptoms that can last for days.
With this interview Nex wants to show that disability does not mean paraplegia and that people with disabilities who can stand and walk are not less disabled.
Feel free to tell something about yourself.
I’m Nex, 22 years old and I’m currently studying applied media and communication science in Ilmenau.
What type of physical impairment do you have and how has it affected your life?
Since I was 7 years old, I have had a rare metabolic disorder that causes muscle spasms, chronic fatigue (Think of it roughly as if I were a cell phone with a very bad battery, while others might last a week on 100% battery, I make it one or only half a day.), word-finding problems, and difficulty concentrating. The symptomatology is exacerbated by many factors, including physical exertion. I can’t put too much strain on myself and I have to get a lot of rest. It also doesn’t matter which muscle part I strain, because in principle no matter where there is muscle, I can get cramps. In addition, I take medication every day and have physio once a week, and every 2 weeks I get home help. I also have frequent doctor’s appointments for progress control.
Do you have a disability card?
Yes, but it is not up to date, I am currently fighting for it. In addition, I have care degree 2.
Does your disability limit you in your everyday life? If yes, to what extent?
Very, for example, I can’t walk or concentrate for long periods of time, which has an impact on pretty much all areas of life. Uni is made more difficult as I can concentrate more or less depending on the day or I can’t make it out of bed at all due to pain/exhaustion.
What is your social environment like and what influence does your impairment have on it?
I can’t do anything often, so I only have a few friends, but very close ones. Most of the time we do something indoors, like cooking and watching movies/series or I gamble with my online friends.
Were there situations in which you felt discriminated against? If so, what kind of situations were they? Feel free to describe them in more detail.
Unfortunately, due to the rarity of my disease, I always have the problem that no one takes me seriously or makes it unnecessarily difficult for me. Last year was the best example of this. I had an infection in January 2021 with a subsequent drop in performance, I could no longer concentrate for half an hour and my physical resilience is also almost non-existent. That’s why I applied for a care level, mobility assistance and a reassessment of my GdB (degree of disability). Everything was initially denied and I had to appeal, again wasting valuable time that can come with a condition worsening due to stress. At the time of writing this, I am still trying to get my GdB increased from 60% to at least 80%, which was last updated in 2016. Since then, however, the criteria have changed, sometimes resulting in other people being denied disability even though their condition has not changed. I am fortunately somewhat better again from a concentration standpoint, but I am effectively unable to walk (<5 min), which qualifies me for a higher GdB (in theory). I am not allowed in the handicapped parking space, although I use an electric powered wheelchair.
What kind of hurdles do you have to overcome when you go/fly on vacation?
Vacation for me involves a lot of preparation. I can’t go anywhere without my pills or my aids. I also have to be careful with my diet because I can’t tolerate wheat. In addition, I have to be careful that I don’t need a vacation from my vacation as well. That is, I must not overload myself during the vacation, otherwise I will have to rest for another week afterwards. Possibly I must still take aids with me.
Do you need/have people to help and support you on a daily basis?
My partner and my mother support me energetically, as well as my domestic help.
What policy and social changes would you like to see to make life easier for people with impairments?
- The basic rejection of applications is really problematic, because not everyone has the capacity to get help and write appeals. I’m lucky that my mother, as a former administrative assistant, supports me in this, as well as various support organizations such as the VDK and the EUTB. These are both important resources for these problems.
- Many places are not handicapped accessible, which prevents me from participating in normal social life. Ramps, elevators and enough space in passageways are missing.
How would you like people without physical impairments to approach or interact with you?
I should just be treated like a normal person. Sure asking for help or giving assistance happens more often, but I am still a human being and would like to be treated like one. I hate it when people treat me like a raw egg or with excessive pity. Pity does nothing for me except make me feel reduced to my disability.
Are there any successes/achievements that you have achieved despite your physical impairment that you are proud of?
It depends on the day. Sometimes I’m proud to have dressed at all, and on some days I manage a lot more. In my situation, you should basically be proud of the little things, otherwise you’ll collapse psychologically. But in general I’m proud of the fact that I push through every day anew, to go to university, to pursue hobbies, etc., no matter how difficult it seems at the moment.
If you can think of any other things you would like to say, please feel free to share them.
- Many misunderstand disability. Blind people see nothing, wheelchair users are basically paraplegics. But one aspect that is very important to me is always misunderstood. I can still walk a bit, but that doesn’t mean I’m faking my disability. No – for me and many other part-time wheelchair users, walking or standing for long periods of time is accompanied by immense effort or pain, so you don’t have to accuse them of faking it. I myself have an arsenal of assistive devices, my aforementioned electric wheelchair and my walker. But no matter if I travel with or without aids, I am still disabled.
- Person first language is imo bullshit. Of course I am a person with a disability, but if you have to express it that way to even recognize me as a person, you should urgently do something about your outdated attitude. Besides, the disability is a quite determining, but only part of my person. For example, I am also an artist or a gamer, an aquarist or a cat mom.
If you feel like Nex, or if some of the passages in this text spoke to you, then take a look at this website: