In this video Jan Troost of the Kreukel Collectief talks about an old t-shirt he found that takes him back to his days of protesting about genetic screening at various genetics conferences.
[Jan Troost translated into English from the video] Yes. This is a very old T-shirt. Luckily my wife hadn’t thrown it out yet. It was made in the 1990s.
Fair Game T-Shirt – Jan Troost
The first time I was confronted with ethics was in Pavia, during a congress of the Osteogenesis Imperfecta Foundation I attended. At that time a doctor approached me and said:
“This is my first time seeing an actual person with O.I. instead of under a microscope.”
That startled me, to be honest. I decided with a WIG group in Nijmegen, Yvon Bakker en Michelle Goore en Hans, to start the action group FAIR GAME. For those who can’t see the picture: the T-shirt has a bull’s eye with FAIR GAME? underneath. The bull’s eye has a DNA helix in the middle. The fact of the matter is I have a hereditary disability with a 50% chance of inheritance. I married in 1988. In 1990 we thought:
“It’s time for people with disabilities to formulate their own vision.”
At the time that did not really happen. PSLP had meetings we disrupted with these T-shirts. Because they involved the parents and medical specialists. But people with disabilities never got the floor. In 1994 we organised the symposium ‘Child To Order’ in De Lindenberg in Nijmegen. Peter van Ingen, a Dutch journalist, caught wind of it and joined too. It was actually the first time that people with disabilities shared their own vision. It was often said:
“Listen up, if you can avoid this…”
All the while side-eying me:
“… that’s not a bad thing, right? … “We can prevent a lot of suffering.”
The lists for genetic screening got longer and longer. ‘The Perfect Child’, a book that was published at the time by Doctor Jansen who said that Down syndrome was incompatible with life. Yvon had a muscular disease, Michelle had spina bifida, So we thought:
“Well … We’re not talking about you, of course!”
Insurance companies became increasingly involved and then we decided to organise that symposium in Nijmegen. That was actually the first time people with disabilities spoke up and shared their vision. The choice to have children or not, I know that myself, is very hard. I have to be honest: Beforehand we thought of everything we could, just not that we would have twins who would die shortly after birth. They did not have O.I., like me. The doctor immediately said:
“You should have done genetic screening!”
That’s not what you want to hear when you’re expecting. It’s good to realise that we found out then that doctors and gynaecologists are required by protocol to ask twice during a pregnancy whether you want genetic screening or not. My own disability was a mutation, so being a mutation I can never blame my parents. They didn’t know. But we do know. That is a whole new way of … How do we deal with that in the future?
And the T-shirt? It might be slightly washed out, but I will keep it a bit longer. It might one day end up in a museum, you never know.
Henriette Sandvoort of the Kreukel Collectief responds to Jan Troost’s reminiscences in the following video.
The translated text is presented in poetry format, as follows:
Worthy people
We are all human
We all have our own wishes
Everyone matters
No matter how big or small
Every person is worthy
And is on this earth for a reason
Whoever you are and whatever your flaws
Nobody should be excluded or cast out
We need each other
Nobody is redundant
Nobody is flawless and perfect
Every person has some sort of defect
Life is meant for everyone
And we keep each other going
We must do it together, together we are strong
That is the strength in our work
Outlawed: Sander Hilberink of the Kreukel Collectief responds in video with the following poem to Jan Troost’s Object 3: Fair Game
I’m the outlaw of normality
Criticized by the walkers, silenced by the talkers
Threatening their air castle, the jester causing hassle
As diversity means nonconformity
I’m the outlaw of normality
Personalized as fool, exception to the rule
Reflecting their fears, their inviolability pierced
As diversity means unpredictability
I’m the outlaw of normality
Scavenged for my genes, apologized for what I mean
Endangering their prosperity, their defective posterity
As diversity means inferiority
Although outlawed by the ableist monster
I do not hide, I do not run
I vigorously and loudly wheel on
Until I victoriously finish in normality
(MICRO)BEAST OF BURDEN: In this video Piet Devosof the Kreukel Collectief explains his poetic response to Jan Troost’s contribution Object 3: Fair Game.
In the bud unbroached
I was rid of being;
eight cells bereft of self,
a nobody, between nothing and existing,
thought of best as absent.
Where profit spells every one’s pulse,
my chromosome count weighs too heavy,
as my intended parents were told,
my code read like dead capital;
nonetheless, theirs was the choice or guilt.
Within me the excess lurked, the lack,
the all too calculable difference
that gradually becomes a costly burden,
the preventable suffering, the whim
of nature deferring every sense.
And yet, in my petri dish – stifled –
the promise breathes, outside of time
hopeful in its unborneness:
in those after me life roars, frail
and imperfectible, forever more.
Piet Devos
3 juli 2021
That summer I was OUTLAWED: Petra Jorissen of the Kreukel Collectief responds to Jan Troost’s contribution by video as she was unable to attend the actual Object 3 workshop.
[Translation into English from video] During the last workshop, we looked at a photograph of Jan Troost, sitting in his wheelchair, looking out into the world fiercely. He is wearing a T-shirt with the text Fair Game. It’s mostly Jan’s active gaze and the word Fair that strike me. Good combination, I think unencumbered. Next, I see that his shirt says OUTLAWED. Oh no, this is not just any picture from any day. Troost was campaigning. The discussion of whether being born with an issue is desirable had once again come up. It might be better to prevent imperfect life … Who could better answer that call than the person with the issue himself?
The picture misled me. At first, I was startled because I had not been looking right. Sometime later I realised that looking longer showed me more and very different things. Looking longer is akin to thinking. Looking longer, in this case, took me back to the year 1974, the year in which I felt fair game, the year in which I was OUTLAWED multiple times.
The first time went like this. I was visiting a renowned spinal surgeon in Arnhem at the time, due to the increasing scoliosis of my back. The famous surgeon with a dark red face full of flakes said to me: “Young lady, get undressed, get on the table and we will have a look,”
I had just hoisted myself on the examination table with great difficulty – adjustable tables did not exist yet – when the surgeon whistled and rushed towards the phone to consult with a colleague:
“Amice, fellow, have I got something here! A humongous scoliosis! You have never seen anything like this! …. I have no idea what to do with it.”
The visit was short: He said: “Get dressed again young lady, there is nothing I can do for you.”
When I left the consulting room he came after me, gave me a pat on the cheek and said: “Between you and me: in fact, you are nothing more than a talking head.”
Two weeks later, it was summertime, I was on holiday in Rhodos. The hotel was mainly filled with loud Germans who enjoyed their beer straight after breakfast. The breakfast hall was bustling. All of a sudden, one of the guests hit the table with a wooden spoon and stood up. With a piercing look and nimble finger she pointed at me and shouted:
‘‘Nach, sind wir allen in Rhodos in die Ferien um so etwas Unwertes zu sehen?” (After, we are alone in Rhodes on vacation to see something so worthless?)
The breakfasters shuffled somewhat uneasy in their seats, other than that the room was dead silent.
After my holiday I commuted by train between Eindhoven and Maastricht for my job regularly. At the end of a humid day I sat across from a woman with a little toddler girl. She asked her mother: “Mama, mama, what’s wrong with that lady?” Mum positioned herself well and started declaring loudly that some people are just born like that. That there used to be a lot more of them. She added: “But if you are about ten, something like that isn’t born anymore. We have taken precautions for that.”
Rarely had I wished so fiercely for the floor – me included – would fall away from under the train. Fellow travellers looked skittishly in my direction, hid behind their newspaper and many a passenger suddenly lost something and rummaged through their bag. The silence lasted for minutes.
Unwertes and ‘talking head’ buzzed in my head for weeks. Followed by the frantic mantra: ‘Don’t think about it, don’t think about it, no, don’t think about it…’
Luckily, I don’t think about it very often anymore. Even though we still tend to get at everything that is broken – as Marlieke pointed out. OUTLAW-ing is an awful phenomenon, connected to ‘being-a-thing’. No matter how woke we seem to be these days: things are easily disposed of when they are forming an obstacle. And when it happens in dead silence. Wer sich nicht wehrt, lebt verkehrt (if you don’t fight back, you live wrong!) I once read on the Berlin wall. I still don’t know what the best way is.
Petra Jorissen
