PARENTS

What Not To Say To Parents Of Children With A Disability

24/03/2015 17:23 | Updated 24 May 2015

not to say

If there's one thing that exasperates parents of children with disabilities, it's the things other adults say to them. "Knee-jerk responses are so unhelpful and yet I hear them all the time," explains one parent. "It brings up so many emotions for me when adults say inappropriate things and I find that really, really hard," says another.

Language is a powerful tool that can cause great harm if used unwisely, says Mark Deal of the disability charity Enham Trust. "Generally, it is not that people are unfeeling. Rather, they are unthinking," he says.

And this, he explains, is why people certainly shouldn't be berated for using inappropriate language if it is well-intentioned. "But they should be challenged."

It is in this vein that we decided to ask parents of kids with disabilities which comments they find most upsetting and why.

Nobody is suggesting disability shouldn't be talked about. But it would be good to finally see an end to the most misguided (yet common) things people say and for people to approach children's disabilities in a more positive, constructive and sensitive way.

I'm sorry to hear that

"Having a child with a disability should not be viewed as a disappointment or loss that requires an apology," says Emily Giordmaina, a counsellor at the NSPCC helpline. Remember there is absolutely nothing to be sorry for, agrees Neil Taggart, operations director at FitzRoy, a charity supporting people with disabilities. "Suggesting that there is, focuses on the negative and implies that sympathy is required."

What's wrong with him?

There is nothing "wrong." To the contrary, disabilities can give children and their parents positive experiences – understanding and insight that others may never have, for instance, says Giormaina. It's not helped by the first three letters of word "disability", points out Mark Deal. "Unfortunately this often means the focus becomes the limitations of the child, as opposed to a child with a few or some limitations."

Bless her, poor little mite

"I've heard this many times and seen parents bristle on most occasions," says Stuart Dryden, regional manager for North East and Cumbria region of Community Integrated Care. "Parents know that despite the progress made in our society, their child faces an uphill task to have a future full of the opportunities they deserve. They want their child to be empowered, not pitied."

It's easy to see why people say it, says Deal, especially if there has been a complication at birth or an accident. "But although we may feel sympathy for the circumstances that could possibly have been avoided in some cases, never feel sorry for the child," he says. "These are still amazing children that are there to be loved and accepted the way they are and for who they are, just like every single one of us."

Have you tried...?

Let's face it, the chances of you knowing more about the disability than the child's parent is pretty slim, so it can sound downright rude to assume your ideas are more advanced, even if you mean well. "We have tried most things and researched every possible reason why our son was born with his condition," says Andrew Gates. "We have been on countless training courses, read hundreds of books and met many other families like ours."

But he doesn't look ill

"He's not ill, he has a lifelong developmental disorder." If Sandy Bloom had a pound for every time she'd said this about her son, she'd be a very wealthy woman. "Like many disabilities, autism is not an illness," she explains.

Sometimes what the person is really trying to say is, "Don't worry, you could never tell," says Taggart. "But this is fraught with problems too because it suggests a disability is something to hide. In my experience, the reality is that children often have a bigger struggle when you can't tell they have a disability because people don't make the adjustments that they do when the disability is clear for all to see."

Bloom agrees. "When my son clambers out of the car just as physically able as anyone else, people often don't realise that he has little concept of danger from other vehicles, for example, and needs constant supervision to be safe, even though he is almost 10."

It make me realise how lucky I am

"What you are doing here is being disrespectful not just to the child, but to the parent too," says Taggart. "It's suggesting that the parent is 'unlucky' and there is also a sub-text that your life is better and happier." Stop for a moment and consider that this family might enjoy their life just as much as you and feel just as "lucky" as you, in spite of their perceived difficulties, he says.

I don't know how you cope

"Sometimes nor do we, but these boys are our world and they are the priority, not us," says Paul Atwal-Brice. "Instead of speculating, it would be more constructive to offer support. Indeed, if society was more aware of how difficult it can be as a parent of a disabled child, then there might be more accessible help available."

For Julie Ashton, the most grating thing about this phrase is that what the person is really doing is pointing out that her life is so different, which "I don't really want to be reminded of."

"Sometimes people don't even have to say the words," she says. "I often get a pitying look when my son is kicking off and having a meltdown in public. I hate it."

It's also worth bearing in mind that while some children with disabilities require additional care and support, which at times can put pressure on families, assuming this is the case for all families is wrong, says Giordmaina.

At least your other children are OK

What makes a child OK? The fact that they can talk? Or have full range of movement? "I know a number of disabled children that are far better at communicating and being mobile than some neurotypical children," says Deal.

"Again, people need to be sensitive that they don't get influenced by what media portrays as being 'normal' and realise that 'normal' can take on many varying forms."

i

The bottom line is that parents love their children fully for who they are and the joy they bring to their lives. Parents of a child who has a disability fight every day to ensure all their children are seen as equals and any suggestions to the contrary is offensive.

i

Is it a degenerative condition?

"The sad truth is that for some children who have a disability, they will have a shorter – and in some instances, much shorter – life than others," says Dryden. "Each moment is therefore even more precious and most parents want to spend that time ensuring their child has as many fulfilling and rewarding experiences as possible. The constant reminder that they may one day have an awful moment to face is at best unhelpful and at worst, unkind."

So he gets out and about then?

"Unfortunately, this is a generational comment that is deeply seated in how society wanted to portray those with disabilities for a very long time," says Deal. "It is only recently that our society has been encouraged to become more inclusive and hopefully with more exposure, this will soon become a non-issue. But yes, people with disabilities like many of the same things that we do!"

Weren't you brave to have another child afterwards?

Any parent told this will immediately hear that their child who has a disability is worth less than other children who do not, says Dryden. "Taking the decision to become a parent and have a family is always brave. The suggestion is that having a child who has a disability is an impediment to the lives of the parents is abhorrent."

There are other reasons parents can get offended by this. "Someone who works in education said it to me recently – an arrogant remark, considering that my daughter acquired her disability," says Catherine Grange.

Meanwhile, Simon Mills says, "What it says to me is that disability is something avoidable and indeed to be avoided at all costs. Well, that's discrimination right there."

But she has a lovely personality

Yes, and the rest of her isn't bad either! What you're doing here is suggesting that the child's personality is all she has going for her. No wonder parents get offended and hurt. "Presumably my son would have a lovely personality if he didn't have a disability," points out Kate Simmons. "The two things have no bearing on each other."

Is she an invalid?

Firstly, terms like "invalid" and "special" should have disappeared long ago because they are both condescending and unhelpful. Secondly, having a disability is only one aspect of a child's being. It doesn't define them as an individual. Thirdly, is it even appropriate to ask about the disability? There will be times when it is, but other times it will come across as pure nosiness. If you decide it is appropriate to ask, make sure the terminology you use is accurate and inoffensive.

Suggest a correction