quinta-feira, 22 de julho de 2010


Living with Achondroplasia


By Ivy Broadhead, The Evening Chronicle

What's it like being a little person in a world that's designed for the tall? Here Ivy Broadhead, 17, from Gateshead, talks candidly about her life and answers some frequently asked questions.

For years I had been watching and waiting with something like trepidation, and the moment finally arrived. My baby sister was taller than me. I was born with the genetic condition (not disorder, people!) achondroplasia, which is the most common form of dwarfism.

I am the third generation of my family to be affected: like my brother, my dad and my grandfather before him, I have short arms and legs, small hands and feet and a differently-shaped skull.

We look very different. Everywhere I go, I attract curiosity, and there are aspects of being a small person which are very difficult, but I would be the first person to disagree with the assumption that small people are in some way brave, special or cute. We are normal people, living normal lives. We are born, eat, sleep, breathe, work, study, marry, have children, get ill and die, just like everyone else.

I have what I think is an ordinary, uninteresting life. I live in Gateshead with my mum, stepdad, and two sisters, Alba, 17, and Violet, 12, with my dad and stepmum around the corner, and my brother Robert, 16, living down in Cambridge. I am just about to go into Year 13 at sixth form, waiting anxiously for my AS-results, and one day would like to go on to study English at university.

I don't notice the little things that I have to do differently from other people. My family and I have always just got on with life, finding ways to get around what we can't do and focusing on what we can. To me, the ins and outs of life as a dwarf are all very mundane but people seem to have a lot of questions, so I'll do my best to answer some.

What do you call a small person?

This is a tricky one, and there's no right answer. Midget is a definite no-no, as are mini-me, oompa-loompa, "one of them off Peter Kay" (all of these are genuine responses from strangers) and anything else in that vein, as is singing anything from Snow White.

I am comfortable with the word dwarf, but because of the negative way in which it has been used, many people aren't. The entirely PC term would be a "person of restricted growth," but most would be comfortable with "little person," or small or short person. It is important to remember that while we may look unusual, we are not a different species: "it" is not an acceptable pronoun.

Do all small people come from a family of small people?

No. My situation is very unusual and, in fact, the vast majority of small people are the only ones in a family of tall people. Because achondroplasia is a dominant condition (here come the genetics, I'll try not to confuse you), when I get round to having kids of my own the chances of me having a small baby with a tall partner are 50/50 tall to small.

With another small person, things are slightly more complex; there is a 50% chance of a small baby, a 25% chance of a tall baby, and a 25% chance of a "double-dose" baby, who will have two versions of the dwarfism gene, and will not survive past infancy.

Where do you get your clothes?

A friend once made me laugh asking me if there was a giant shop where little people got their clothes from. Sadly, this is not the case.

There is no great boutique in the sky that only little people know about. I simply buy clothes from Topshop or H&M or wherever, and alter them to fit. Hems have to be taken up, sleeves shortened and waists taken in.

On a good day I can still fit into kids' clothes, which comes in handy when you want cheap T-shirts and the like, but less so when trying to avoid looking like an 11-year-old, or worse, a kids' TV presenter.

Do small people have a lot of health problems?

Some do, yes. It depends on the condition, but a lot of RG (restricted growth) people end up having a lot of back surgery and being in quite a lot of pain. But some, like me, live quite normally.

I have walking problems and get more back and joint pain than others my age but certainly not enough to stop me being the first (and last) on the dance floor whenever I go out. I just know I'll suffer the next day!

How do small people cope with reaching things and getting around?

It's a tall world out there and everywhere I go I am confronted with shelves I can't reach in shops, locks I can't lock, doors I can't open...But you soon lose any shred of embarrassment in asking for help when you need it and become very resourceful at climbing on shelves and knocking light switches with whatever comes to hand.

Does your house have a lot of alterations?

No. I have a step stool and the front door lock is down low, but that's about it. My dad's wife uses a wheelchair so at his house there is a wheel-in shower and a lower kitchen work surface, but apart from that and a few steps around the place, it looks just the same (a little messier, perhaps). Some people have more but I find that I manage OK without too many gadgets.

How do small people drive?

Generally, all it takes is to have pedal extensions welded to the existing pedals to enable short legs to reach, although in some cases it is more complicated.

Have you ever been lifted up?

Yes, several times, generally by idiots in bars and I can report first-hand that it isn't a pleasant sensation to be suddenly hoisted several feet up in the air by a perfect stranger, particularly not if you happen to be wearing a skirt. So the next time you happen to see a small person and have an urge to pick them up, ask yourself whether they actually are a toy.

Do you get stared at a lot?

Yes, mostly by children, which is just something you have to accept. They will be curious upon seeing something for the first time, and children have very little shame when it comes to asking questions. Just like they'll cheerfully inform someone they're fat, they'll helpfully observe that I'm a "funny little lady".

With children, this is understandable, although parents should try to encourage them not to laugh and to realise people come in all shapes and sizes.

What really makes my blood boil, however, is when teenagers or adults think that it is OK to laugh, stare, point, make comments and generally ensure that everyone around them has noticed.

It isn't right or fair that we should have to put up with being made to feel ridiculous in public. We don't think it is acceptable to behave like this towards people in wheelchairs, black people, people who are otherwise different, so why is it still OK to act so rudely towards little people?

Changing attitudes

Ivy's dad, Dr Tom Shakespeare, also has achondroplasia and is a leading genetics expert based at Newcastle University.

He's spent much of his working life studying the science behind dwarfism and is currently undertaking a research project which he hopes will help change people's attitudes towards the disorder.

"We're hoping to understand more about the medical and social problems that people with restricted growth face. There's still a lot of ignorance about dwarfism.

"For instance, being short is still the butt of a lot of people's jokes. You wouldn't see any comedians nowadays making racist or sexist jokes but jokes about short people seem to be accepted."

Tom can often be heard speaking on television, radio and in schools about dwarfism, trying to educate people about his personal experiences of being short.

But this doesn't stop him being affected by people who think they have the right to publicly ridicule him, just because of his appearance.

"As we were driving down the road some boys started continually shouting shorty at me. I'm an adult but comments like these are still humiliating. People should think twice before they speak."

*Tom is appealing for anyone with dwarfism who wants to take part in the research, which they can do anonymously, to contact him on 0191 2418650

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