Is Disability a dirty word?

A parent complained the other day that someone described her child as disabled. The child has a combination of different impairments, different special needs, but these do not, in the eyes of the mother, add up to a child with a disability. The child cannot walk without falling over, but this does not make the child disabled.

I have to admit, I was surprised by this. See, my girls are disabled. Profoundly disabled. I don't think Little Fish's disabilities get in the way of her doing anything other children her age are doing (she's certainly got the screaming tantrums of the typical toddler, and is recovering from one as I write this. So am I). But that doesn't make her not disabled. When the playing field is level, her wheelchair goes just as fast, if not faster, than other toddlers can run. She can steamroller quite a few of them, producing an entertaining human skittle effect, if she hits a row of them at just the right angle. She can play, scream, learn, get tired and get ill, make massive messes and be hugely helpful, be adorably loving and infuriatingly obstinate, often all at the same time. She is, in most respects, a pretty average toddler. As far as most people who meet her on a casual basis, she is a toddler who happens not to have use of her legs. There's more to it than that, but that's probably all that is evident on first viewing (at least once the scars from her nasogastric tube fade away).

I would be annoyed if a stranger in the street called her retarded, I might wince if they decided to call her handicapped. I would definitely be upset if that stranger called her own children away and crossed the street to avoid us (yes, it happens). But to be upset because they notice my child is disabled? It seems strange to me.

I know that being a wheelchair user makes a child obviously disabled. Perhaps wobbling is subtler. But having fostered wobbly children, I'd prefer that passersby noticed the disability, and took steps to compensate for it (by giving the child more space to move), rather than shout at the child for being clumsy or stupid or careless. Wouldn't you? Or would you? Perhaps I am odd.

I certainly prefer "disabled" to the comment we had in the supermarket once. I was pushing Mog in her comfy new wheelchair - so comfy that she had fallen asleep in it. A little boy ran up, looked closely at Mog sleeping peacefully, and ran back to his mother shouting "I think that little girl's dead!" I'm quite pleased she was asleep - not sure how I'd have explained that one to her.

Disability is difficult (queen of the understatements). To the medical profession, my girls are failures. Little Fish should never have been born, Mog was either a mistake or an unfortunate accident. Their continued existence is a constant reminder of the limitations of current medical practice. The urge amongst surgeons is to fix, fix, fix. The temptation is to keep on trying to fix, trying to make the broken body that much more perfect. Or alternatively, to give up, to stop trying to make one small part a little bit better, because overall, the child is still massively, grossly, broken.

I have had doctors refuse to treat my girls; the hospital doctors refused to admit one child who had been having seizures for three days straight because, in the words of the doctor "she's severely retarded and it is to be expected". I have had a doctor tell me that Mog's gastric bleeds and vomitting coffee grounds is "trivial, compared to everything else she's got going on and not worth treating". Over and over again I have to remind unfamiliar doctors that I am not looking for a miracle cure for cerebral palsy or spina bifida, I am not trying to take away the girls' disabilities, I am simply asking for help with one particular problem. Which may in itself have nothing to do with the disability. Disability is not insurance against the normal hazards of growing up. Being disabled does not protect a child from chicken pox, colds and 'flu, broken bones and appendicitis. It's easy, apparently, to ascribe all symptoms to the disability. My daughter is not crying in pain, she's crying because "that's what children like that do". My baby is not gasping for breath, "he's found a sound which he finds funny".

I've also had doctors and therapists try to fix what can't be fixed, trying to force my daughter's body into positions it cannot hold without pain, unbelieving when I explain that Mog cannot cope with having her feet clamped to her footplates, or that Little Fish cannot chew with a paralysed tongue.

I suppose what I'm asking is that people neither become blinded by the disability nor blind to the disability. A fine line. Accept that my girls have limitations, but don't impose your own. Maybe that's what the parent in my opening paragraph was complaining about. But I don't think so. I think she was complaining that someone noticed her child was disabled. Perhaps she isn't ready to consider her child to be disabled. I wonder what she would consider disabled to be?

Our government defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities. And states that the impairment must affect one or more of the following capacities: mobility, manual dexterity, speech, hearing, seeing and memory. The child in question has problems with things in at least three of those categories.

I must remember I chose to join this club, the "parents of children with special needs" club. My children come to me precisely because they are disabled; they would not be my children if they did not have their disabilities. I have the luxury therefore, of loving the disability as a part of the child, right from the start. I suspect that, for many parents, membership to the club comes at a price they would prefer not to have paid, and that membership card is something some parents choose to hide for a very long time. I remember a few years ago hearing about another parent, who was raising funds at work for a charity which supports his child. It transpired in the course of conversation, that although he was happy to talk about what the charity does, he had never mentioned to workmates that his child was disabled. Is that the same thing? Hide it away, consider it shameful? Or perhaps simply choose not to mention it, choose to keep one part of life unaffected by the disability fog which clouds every aspect of life at home?

I intend no criticism. People deal with disability in different ways. Parents aren't exempt from that. Provided the child in question (and siblings) is cared for, nurtured, loved, I don't think it matters how the parents do that.

Disabled children and adults are thankfully visible in this country. When we go into town, I am not the only adult pushing a wheelchair. Little Fish sees adults driving themselves in their power chairs, Mog sees other adults being pushed. We see adults and children alone and in families and on outings from local residential care homes. Adults with physical disabilities, learning disabilities, visual impairments, mental health problems, autism.

When I worked in a residential school for children with profound disabilities, the children in that school never saw adults with disabilities. Students left at 19 and were never seen again, staff were all able bodied, as were the volunteers who came to help out or for work experience. Small wonder that some of the children there assumed their disability would disappear once they hit adulthood. The world of adult life was represented to the students by visits from firemen with a big shiny engine, policemen with flashy sirens, actors and musicians with plays and concerts, dancers, postmen with their vans,farmers and vets with their pets. Would it have been so hard to find some of the ex-students, now living in residential placements or sheltered housing, and ask them to come back to talk to the present students about their lives? Or were we scared to show the children too much reality?

Disability is. Disability is lifelong, however long or short that life might be. I wonder what message our children get when such a large part of their life is not mentioned, or conversely when it becomes the only subject of conversation? Somewhere between not admitting that the child has a disability, and not accepting that the child has or is anything other than a collection of disabilities lies the balance. Of course I like to think I've got it right with my girls, but I'm sure I make mistakes at times, and I'm sure my version of right is very wrong to other families.

One thought more. If disability is a dirty word, does that make the disabled child dirty by association?
Tia