Demystifying Disability

A DISABILITY DOES not stop anyone from living a meaningful life or achieving success in many fields. It doesn’t define who a person is, or what they are capable of. We all have strengths, we all have weaknesses, and we all require varying degrees of support to achieve goals.

Yet disability is one of those topics that many people don’t like talking about. It’s often the cause of stifling silences, hushed whispers and pointed stares – all reactions that are very much rooted in fear. It’s one of those things where we worry we’ll say or do the wrong thing, and cause offence.

The reality is that disability is a complex topic. There are thousands of different conditions – many wrapped up in horribly complicated medical jargon – and even people with the same condition respond to it differently. Some disabilities are obvious, some are not, and some take a long time to get diagnosed.

I have Complex Regional Pain Syndrome, or CRPS for short. Thanks to faulty wiring in my nervous system I am in chronic pain in both my feet all the time, which affects and limits my ability to walk. My condition started at the age of eleven, got much worse at thirteen, and was finally diagnosed at sixteen.

And it was terrifying. In a world which prizes perfection I was frightened that my disability would be the defining thing about me. That other people wouldn’t be able to see past my crutches and wheelchair to the person that lay underneath and the value I had to offer.

What made this a million times worse was that people like me weren’t represented in the world around me. Very few high achieving, successful disabled people made it onto the pages of books or were pictured in illustrations. I couldn’t find them on the TV, in magazines or other forms of media. Instead people with disabilities were embroiled in stories around ethical dilemmas, victimised, pitied, misunderstood – or left off completely.

These messages have huge implications.

Underrepresentation and misrepresentation of disability have a profound effect on how we value and identify it. These messages – or lack of them – changed the way I saw myself and the big ambitions I held for my future. I was different, and different is sometimes a very lonely place to be.

It also changes how others see disability. It gives people a skewed vision of a hidden world that paints disability as a problem. Of course, disability does raise additional challenges. Children with disabilities need extra support in certain areas, which can be more demanding on your time or require further training.

It might even get you questioning whether you’re up to the task of fostering a child with additional needs.

The only way to break down this fear is through education. Starting conversations that challenge outdated stereotypes and misunderstandings are essential to this. And please remember, it’s okay not to have all the answers. It’s okay to feel uncomfortable, and it’s okay to get it wrong. Only by doing this can we start to learn and grow.

Understanding starts with an openness to learn.

At Fostering Families we want to explore, inspire and educate, giving you first-hand insight into the world of disability and how you can best support children and young people with additional needs. Today we’re going to start that conversation with three tips to demystify disability.

• Don’t get bogged down by the jargon! The important thing to remember – in fact, the only thing to remember – is that there is a human behind each one of those words, with very human reactions, emotions and needs. A child’s capabilities do not begin and end at the label they have been given. Of course, we need to understand the medical implications of any condition that a child has in order to properly meet their needs, but you are not expected to be an expert. Taking your time to get to grips with this, asking questions, and being honest if you haven’t quite got your head around it is all part of the learning process. There are also a tonne of support communities out there offering guidance. I recommend that you look for the solution-based ones, which offer positive, practical advice.
• Always focus on ability. Any impairment adds another dimension into the mix and our focus is often drawn to the difficulties that the individual faces. The theory makes sense. If we try to fix whatever is causing the issue then hopefully we will see an improvement in functionality. This approach might work for broken kitchen appliances, but not for human beings. The problem with this is it highlights our limitations, which quite frankly feels rubbish. It also creates blind

• spots. If I had to use one word to describe people with disabilities it would be innovative. There are so many things that a person with a disability can do and the way that so many adapt to their circumstances is nothing short of incredible. However, it is much more difficult to explore the world of possibility if you’re constantly brought back to your shortfalls and comparisons to ‘normal’. Remember, success doesn’t come from the absence of weakness, but by making our strengths stronger.
• All children are different and therefore require different levels of support. The more time you spend with a child the better you will understand their requirements – and their strengths. Encourage independence where possible, even if this requires more time and patience. It can be easy to jump in and tie those shoelaces when you’re in a rush. In fact, it often feels like this is the right thing to do. Nobody likes to see somebody struggling, after all. Teaching, guiding, supporting where necessary, and praising achievements will have a far bigger impact on confidence and resilience levels, and help children develop the skills they need to thrive.
• Disability is like any topic – the more you engage with it the more you understand it, and therefore the less scary it becomes. And this learning process is a journey. I’ve had a disability for over two decades and I run a training company in this sphere, and I’m still learning, exploring, and discovering new things about disability. Remember, even small steps take us forwards and this starts with being open to learn.