How does everyone feel about the word 'handicapped'?

[heartinthecountry]

Just asking because in current issue of Junior they use the word twice in two pages (different articles). It really leapt out at me. Part of me wondering whether to write letter pointing this out. (Never normally do that sort of thing) But am I overreacting? Just think it has such negative connotations. What do others think? Does it matter? Is 'handicapped' any worse than 'disabled'? Does it really make any difference to how people with disabilities are seen?

Junior is the only parents mag I've come across that actually seems to recognise SN and disabilities so was surprised to see it there. Is it just sloppy journalism?

blu - No problem, you are doing what I want people to do, ASK not assume, or guess. It is so much nicer if people ask you 'Why are you in a wheelchair' rather than make some comment they think you can't hear to someone else, asking if they know why. I call it 'The does she take sugar syndrome'.
Sorry gone off the point. To answer your question I feel very lucky NOT to have been damaged by thalidomide. However I have a lot of friends, my age who are. That is my connection, and also I do a lot of things (testing & writing a report) when it comes to mobility, and getting about. This is because I am in a wheelchair, I have a VERY rare illness, only 14 people in the country have it, but I am not a sit on your butt kind of person. I was lucky, and I feel my disability has given me quite a strong personality, friends often say to me, when inviting me somewhere "oh God -I forgot the wheelchair". That to me is a compliment because they are seeing me, a person and not the chair, which is the natural first reaction of most people I am afraid.
I am going to be honest here and I hope I do not offend anyone, the people my heart really goes out to, and I feel I want to do something positive for are the parents of children with illnesses like autism. I have seen other mothers look at them in shops as if they have awful, undisciplined children, or that they are awful people, and it seems that it gets worse as these wondeful children grow up, it is a 'hidden' disability. Not long ago I was on a bus, there was a mother with a 12 year autistic son. She was having problems keeping him still in his seat, but the comments of the other people on the bus were so ignorant and appalling, I felt so sorry for that mother. It ended with her son playing with the puzzle on a bright keyring I had. The mother when she got off thanked me. She should not have felt the need to, but I could see she was at her wits end and very embarassed. Why is society like this?
Sorry I have gone on again, perhaps I should have the pseudonym 'Soapbox'. I did not mean to. But parents need support and sometimes when you are disabled you need to be thicker skinned because we go aainst societies norm. I think it is very sad.

Goodness what activity on this thread.

Blu, I'm interested by your son, and his 'wobbly leg syndrome'. I too have an undiagnosed disability (only had it 43 years, my sister the only other person in the world to have something sdimilar). Anyway, it affected the development of my joints, so when I learnt to walk (aged 8), I developed what I now call "an individual gait". Your little-un probably needs to be older before he can use that phrase tho'.

Bunglie

You and I are obviously of the same age, I'm also of the 'thalidomide generation'. My best friend at my first school (a special school) Robert was affected by thalidomide.

Mrs forgetful, you ask about dealing with people who stare at your son, and it is difficult. I have to admit that I don't really notice a lot of the time, just used to it, but if I do notice it, I try to smile sweetly at them. No need to be as ignorant as they are, is there?

On those days when everything has gone wrong, I have been known to say "are you staring at me ? " in a slightly aggressive voice, but find it does no good, I just feel worse for it afterwards.

My dh had to get used to the staring when we first went out together, which I guess is a bit like you feel. Try very hard to ignore them if possible.

Thanks Bunglie I was interested because I have one friend/colleague and another person I have worked with who have been affected by thalidomide, and are active in the ongoing actions....wondered if you knew them (I bet you do - or know of them, anyway!)

Easy - yes, 'individual gait' is a good one. DS will love that, he loves new long words! (he has a missing fibula, one leg much shorter, fused ankel bones, talipes-like foot, 4 toes).

easy & bunglie, what sort of attitudes have you encountered in response to becoming parents? Was there a lot of negativity? I'm just nosey really, there's a new little girl at dd's nursery whose mum is in a wheelchair, I met her briefly before when she was pregnant and wondered whether she got much hassle from ignorant people.

Easy and Bunglie, we are clearly all the same age! I was ludicrously lucky, my mother took thalidomide but I was unaffected. She was so sick that I think it barely entered her system before she threw up again.

Tamum! OMG....

hello Blu The thing is, I have no idea how common that was. I was stunned the other day watching a docmentary to hear the mother of one man with thalidomide damaged limbs say that she only took one tablet. I had always assumed that I escaped because my mother only tried once, but clearly not. I guess it could be that loads of people of my age are in the same fortunate position as me, I have no idea how good the reporting of non-events (for want of a better phrase) was.

I was under impression that there is controversy about whether thalidomide caused birth defects at all -- wasn't it an anti-miscarriage drug? My mum thinks she took it, too. Well, anyway, the theory is that t'mide may have prevented miscarriages (of babies with severe limb defects) rather than caused babies that were otherwise developping normally to have limb defects. I had the impression that the case hasn't been proven either way.

Zebra: But then wouldn't it have prevented the miscarriage of feotus's with other disabilities, rather than just those with the characteristic phocomelia etc?
I too am of the thalidomide generation, and remember a friend of my Mum's being v upset because she had taken an anti-miscarriage drug which had then been proved to cause hormonal/sexual development probelms in baby girls, I think.

and of course there would be 'controversy' - Diustiller's presumably contested their responsibility as energetically as possible!

It wasn't anti-miscarriage zebra, it was anti-morning sickness (usually, anyway). I don't think there's much doubt about its action personally, especially if you look at what's happened in Brazil. There's no obvious reason why a fetus with limb deformities would have been miscarried, and in any case it's still the cause of people being born with limb deformities however you look at it, surely?

zebra - thalidomide was an anti-sickness drug- never heard of it being an anti-miscarriage drug.

Wasn't the problem with thalidomide that there were two types- mirror images of each other. tests had been done on one type- but not the other- and it was this that caused the damage. I think the drugs were a mix of the two types.

Also think I read something talking about babies born in UK and Germany- was thalidomide used elsewhere?

Apparently tamum there were lots of cases where children were affected after one tablet.

And does anyone know why the second generation are now being affected? I think that surprised everyone.

What happened in Brazil tamum?

I guess it was used in Australia, as it was an Australian who made the connection originally, but I don't know for sure. I'll go and have a quick look on Pubmed....

Whoops, cross posted. There's a whole new generation of children with thalidomide in Brazil because it works such wonders as an anti-leprosy drug that a lot of people have not been able to bear not taking it just because they're pregnant. There are clear warnings on the labels, but no real supervision of drug-taking, I think, at least in poorer areas.

Why can't they just manufacture it with the safe isomer? Or would that cost more? grrrrr.

Jimjams, I just found a review by Robin Holliday (as in junction ) suggesting that there is an epigenetic effect of thalidomide, which would be the only plausible explanation assuming there's been no misdiagnosis. Here's one interesting paragraph:

Thalidomide is one of the best known human teratogens. The foetus is susceptible to its effects from the 21st to the 40th day of gestation. It has the potential to produce malformations of most of the major systems of the body. Approximately 40% of babies with thalidomide embryopathy died of either bowel atresia, heart malformations or renal agenesis [7, 8]. However, there are no records which indicate that thalidomide may cause intrauterine death resulting in abortion. The most common phenotypic effect in thalidomide embryopathy is truncation of the upper limbs. Some thalidomide victims have produced offspring, and McBride [9] has claimed that in a proportion of these have an identical phenotypic defect. This has been hotly disputed [10, 11, 12, 13]; in particular, it is proposed that the instances where this has happened are, in fact, due to the misdiagnosis of thalidomide victims and that the heritable defect is due to a gene mutation which mimics the thalidomide-induced phenotype. In other words, thalidomide induces a phenocopy of such mutations. The frequencies of the various events should clearly distinguish the two possibilities. According to McBride [14] about 380 children have been born in the UK, one of whose parents is a thalidomide victim. Of these, 10 have very similar limb defects. Another two cases are known in Italy [14]. If these figures are correct then about 2.5% of offspring have limb defects, which would seem far too high for the mutation, or mutations, which produce the same, or a similar phenotype.

It's also been granted a license, I think, for use in America (and here?) for certain cancers, but under much stracter prescription than is possible in Brazil.

That's right Blu. It's anti-angiogenic, stops blood vessel proliferation, so that's why it interferes with limb development and is such a good prospect for cancer therapy, as tumours obviously need to induce new blood vessels to survive.

I think my best mate at school was disabled as the result of thalidomide, although I've never been sure - we were a year too young, I've always thought.

Tamum, lost your email address and contact details (computer packed up last week); can you send them to me again? BTW to recap on 'learning disabled' - it's the term of choice for a lot of people, although advocacy movement People First prefers 'learning difficulties'.

Will do, and thanks for the clarification

binkie - thanks that is a good point, focussing on positives.... something I need to do more often.

re good looking children, apparently it is true and is researched evidence - can't remember where I read it but autistic kids do seem to be good looking. I think this highlights the "but s(he) looks so normal" kind of comments.

Bunglie - interesting your viewpoint about parents with autism. What do you think about TV progs like Little Britain and the series Nighty Night? Both featuring people in wheelchairs ... They are both on BBC3 so obviously you'd need digital to have seen them.

hi i think the words handicapped and spaz are upsetting as well were we live this lady had her electric buggy pinched by some 11 year olds they threw her off and being disabled couldnt stick up for herself i was worried when mum left me in my buggy outside this shop it had steep steps and couldnt get my buggy up them i was hopeing she wouldnt be long but heard this girl say to some of her mates look a pram for cripples i said its a special needs buggy i cant walk vry well and she said your lazy its a pram shut up and walked behind me so i was worried what she might do to me and being on a slope made it worse mum came out soon after tho and tried catch them up to confront them but couldnt they went off too quick for my mum as she had to push me as well but it just shows how people can pick on disabled people that cant stick up for them selves mum call them cowards they shouldntget a way with it tho is any 1 else been picked on in a way these were about 13 14 year olds