Four important words if you have a disability
When I became chronically ill, I had no idea I would end up in a new world. A world with its own rules, its own standards and even its own jargon. Where groups usually come up with these things themselves, in Disability Country these are imposed by society. In this column you will read four words that apply especially to people with disabilities.
This column is about Dutch words, which might not translate to English vocabulary. I am not entirely satisfied with this translation yet.
Just as you are not a human being with doctors but a 'patient', so with services you are not a human being but a 'client'. We've started calling people 'clients' to show that we take them seriously. A strange choice, because the word 'client' comes from the Latin cliens, which means 'vassal' or 'serf'. A client is therefore someone who is actually dependent and subordinate!
That is exactly what you see in practice: mental health care has 'clients' and those people are crazy, so we don't have to take them seriously. Agencies that work with people with intellectual disabilities, have 'clients' and those people are retarded, so we can't take them seriously either. And the Social Support Act, rehabilitation centers and the medical aid industry work with 'clients' and they are pathetic, so we don't take them for capable human beings either.
In short, 'clients' are a very special kind of people. They are people with whom something is wrong and who are therefore in need of help. They are flawed people. You can only talk about that in a whisper that is a bit too loud…
When I went to college I went to live on my own; I went 'in rooms'. After my studies I moved into an apartment and friends of mine bought their own house. But now I have a disability, I suddenly live 'independently'. And people think that's 'good' of me.
'Independent' is a striking choice of words, because it emphasizes something that is considered to be normal for people without disabilities. You don't hear anyone on birthdays asking another guest, 'Where do you live? And do you live there independently?' That would be taken as an insult – and rightly so!
Apparently we need this emphasis on the independence to emphasize a contrast. Because obviously we do not think it is at all self-evident that someone with a disability (alone or with a partner) lives in their own home. And that's where the monkey comes in: we still assume – consciously or unconsciously – that people with disabilities generally live in assisted living facilities or in an institution.
The new magic word in Disability Country is the concept of 'self-direction'. It took a long time, but policy officers have finally realised that 'self-direction' is also important for people with disabilities. So nowadays this gets attention.
For example, the local nurse will invariably ask you: 'What can I do for you?' I think that's hilarious, because the same local nurse informs you on which day and in what period of time you will be helped. Then you lie in your bed waiting for the local nurse to arrive on time or not, because they can arrive just an hour later (and without any form of message). And finally, it remains to be seen who will arrive today, because the same nurse is a rarity. So, what self-direction?!
But apparently they are really under the delusion that they give you 'your self-direction' with that one question 'What can I do for you?' That question is in any case asking for what is already known. Because if the local nurses comes to shower me, then we both know what they can do for me!
I have never heard the word 'accompanist' so often as since I have a disability. At the Regiotaxi (taxi service for short distances) and Valys (taxi service for longer distances) you can bring an 'accompanist'. You can also get a 'accompanying person's card' from the National Railways, if you meet the conditions. In cinemas they have special wheelchair spaces, where you can go with your 'accompanist'. In many museums, an 'accompanist' can come along for free.
As soon as you use a wheelchair, it is of course assumed that you also have an 'accompanist'. (As if accompanists are delivered standard with a wheelchair?) Anyway, since I roll through life, I no longer have a partner or friends. I only have 'accompanists'. At least, that's what the world usually thinks. The reality is that I don't have any 'accompanists', but luckily I do have a lot of friends!
This column was published on WijRollen.nl on 3 October 2022.
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