Living With Germany's Biggest Pharmaceutical Disaster: Man without arms is thalidomide survivor

[Posted by alaurie_97@yahoo.com]

Living With Germany's Biggest Pharmaceutical Disaster
Man without arms is thalidomide victim

:

Millions watched a controversial German TV film based on the
thalidomide legacy last week. On Friday, Nov. 9, "Side Effects" was
also released in English. DW-WORLD.DE spoke to a thalidomide survivor
and his mother.

In the autumn of 1960, Margret Schlömann, now 75, had trouble sleeping
during her pregnancy and had taken an over-the-counter sedative called
Contergan, which was produced by the privately owned German drug maker
Grünenthal.



What Schlömann and thousands of other pregnant women did not know was
that Contergan's active ingredient was thalidomide, a toxic substance
that severely stunts the growth of a developing embryo's limbs. In
June 1961, her son Markus was born without arms and thumbs and fingers
that jutted out from each shoulder.



Today Markus Schlömann, 46, is one of around 2,800 thalidomide
survivors living in Germany. Born in Bonn, he works for a bank, is an
avid world traveler and has a seven-year-old daughter, Lena.



His mother also lives in Bonn and helps look after Lena.



DW-WORLD.DE: Frau Schlömann, what was it like for you after giving
birth to Markus?



Margret Schlömann: Markus was my first child, so I didn't know what to
expect. He also came six weeks early. Pre-maturity was common for
thalidomide babies. After a normal hospital delivery, he was whisked
away and put in an incubator. I didn't get to see my son. Nobody
congratulated me. No one spoke to me.



My husband Herbert had arrived, bringing flowers, but he was
intercepted by the doctor before seeing me. I knew something was
wrong. "Is the baby dead?" I asked Herbert. He broke the news to me. I
was in shock, physically exhausted from the birth, and suddenly
overwhelmed with grief.



I saw Markus four days later. My maternal instincts took over, and I
held him close. There was another mother in the ward with her
perfectly normal baby. She saw Markus there without any arms, and
shrieked "What is that thing?"



You must have wondered what caused your child to be born without arms.



Margret Schlömann: A tiny percentage of babies have always been born
with birth defects, and I thought that Mother Nature singled Markus
out to be that one random statistic.



What I didn't know at the time was that clinics all over West Germany
were seeing a sudden, drastic boom in the number of babies born
without arms or legs or any limbs at all.


I joined a thalidomide support group for parents. It became clear that
some outside factor must have been responsible for the limb
deformities, but what? Was it radioactivity from nuclear testing? The
shampoo I was using?



Then in November 1961, it came out in the newspapers. It was
Contergan. I was hysterical. My doctor had urged me to take Contergan.
In those days, you simply didn't challenge doctors or authority
figures.



I took maybe two tablets throughout the pregnancy, but I was too busy
to dwell on my feelings of guilt, which surfaced in later years. After
Markus, the twins [who were healthy] came 18 months later, and
restored a sense of normality in our lives.



How did people react to Markus?



Margret Schlömann: Some were voyeurs -- they were either fascinated or
repulsed by his armless torso. One old woman made such a nasty remark,
"How could you bring such a freak into this world," she hollered.
Others pitied him. His appearance obviously made people feel squeamish
or uncomfortable.



When he was a small child, the neighborhood kids taunted him, but the
worst insults were directed at another thalidomide boy, who had no
limbs, only extremities. The kids flapped their arms and chanted,
"Penguin, penguin, see that penguin, ha, ha."


Markus, have attitudes toward the disabled changed in Germany?



Markus Schlömann: Yes, definitely. In the past, families felt ashamed
of their disabled relatives and hid them from view, so handicapped
people were far more isolated in the 60s than they are today.



Germans have become much more open talking about disability now. This
is in part due to the AIDS/HIV revolution and greater awareness of the
so-called diseases of civilization in the last decades, when those
afflicted came out of the closet.



A lot of people don't even notice my handicap anymore. One colleague
said, "Can you get that folder on the top shelf?" Then they realize I
don't have the arms to reach for it.



It's only when Lena was born and started going to school that my
disability became an issue again. Lena's schoolmates are not cruel and
insensitive as kids in the 60s were, but they get on my nerves. "Why
are your arms so short?" they keep asking over and over, even when
they know the answer.



But kids are like that ...



Markus Schlömann: Yes, but they can ask me other questions. I don't
want to be defined by my disability.



Mostly adults, on the other hand, try to be helpful towards me. One
guy offered to bag my groceries even though I am perfectly capable of
doing it myself. I tried to be gracious about it, although I have some
thalidomide friends who feel offended, even hostile towards such well-
meaning gestures.



thalidomide schoolboy writing with his extremely short
armBildunterschrift: Großansicht des Bildes mit der Bildunterschrift:
Markus had attended a special needs school

You've also traveled quite a bit. You've taken a Greyhound bus across
America, you've been to India seven times, and taken trips to Latin
America, Vietnam, Thailand, Indonesia, Fiji, Australia. How do
reactions toward your disability differ in those places in comparison
to Germany?



Markus Schlömann: I have never had a negative experience. I've always
been a communicative person, and people respond in kind. Someone might
be impressed by the way I can lift a coffee cup, but I don't know how
to do it any other way.



In Thailand, where extended family structures are part of the culture,
people are astounded that I have a regular banking job. They ask me,
"Why doesn't your family take care of you?"



In some countries though, the infrastructure for handicapped people is
not great. Germany is much further along in that respect. The
increasing acceptance of disabled people here is reflected in how our
special needs are addressed. Public buildings are equipped with
wheelchair ramps and cars are specially designed for people like me to
drive.



But in German schools, the physically handicapped are not exactly
mainstreamed into the system. There's the so-called special needs
school, which you attended.



Markus Schlömann: There was no alternative when I went to school in
the 60s and 70s. The advantage of a special school is that the entire
curriculum is geared towards your needs. In the afternoons we had
gymnastic training to strengthen our back muscles for example.



We were all physically handicapped in some way and had great fun
together, but by the time I graduated, I wanted to move out into the
wider world.

"A lot of people don't even notice my handicap anymore"

Do you get frustrated about your physical limitations when you see
others performing simple tasks that you struggle with?



Markus Schlömann: I wish I could have been born otherwise. I would
have liked to play the guitar. I would have liked to be a marine
biologist or a forester. I wish that I could hold my daughter's hand
when we walk down the street. But this is my body and I have to live
with its limitations.



There are so many thalidomide adults who are much worse off than me. I
have a good, well-paying job. I can walk, ride a bike and play
soccer.



Some of my friends have physical limitations that make them
unemployable. Many people I have known have died from their severe
disabilities, others committed suicide. I think I've come to terms
with my life.