Rethinking Childhood Disabilities – Happiness vs Healthiness

This inspiring TED talk by Para-Olympian, Karni Liddell, has really got a lot of people thinking about how we look at disability.

She begins by drawing our attention to the conversations so many parents-to-be have when they are asked “What do you want to have – a boy or a girl?” and the socially-acceptable answer they tend to respond with: “All I want is a healthy baby”.

Nothing particularly shocking in that exchange, right?

But, Karni asks us to consider “Does a healthy baby necessary equal a happy baby?”.

Karni realised at the age of 34 that a “healthy baby” was exactly what she and many others were not and asks, “Does this make me every parent’s worst nightmare?”.

She describes herself as “chipper, fit, healthy and whole” – all adjectives in direct contrast to the dictionary definition of “disabled” – and points out that there are many individuals out there that are born “healthy” but who do not appear to be that happy at all.

She suggests we think carefully about the language we use and asks us to consider rephrasing what we should be saying to: “All I want is a happy baby”.

Karni has a muscle-wasting disease called Spinal Muscular Atrophy. At birth, her parents were told she would never walk or crawl and would not live past her teenage years.

However, Karni’s parents were determined not to give up on her. They helped her find the means to walk and to fulfill all kinds of other goals that doctors said she would never be capable of – becoming a swimmer in the Para-Olympics being just one of them.

As she tells her story, it is clear that her parents instilled an amazing resilience in her, they brought her up to be a positive thinker who is now giving back to the community as a social worker and an inspirational public speaker. She is certainly not the kind of person we would typically think of as “disabled”.

The message that I took away from Karni’s talk was this: Anyone can be happy, regardless of the state of your limbs.

Your attitude to life is of more importance in determining whether you will attain goals and face challenges than any predetermined set of physical attributes.

And, for Karni, no doubt her parent’s attitude was one of the largest contributors to seeing her grow up with such an optimistic outlook.

Now, there is a big part of this message that I agree with, but it did also raise a few questions about disability and it’s relationship to happiness that can’t be answered easily.

Although having a disability – either intellectual or physical – does not prevent someone from achieving a fulfilling life and attaining happiness, many people would suggest that it does put up a multitude of challenges that make things more difficult.

First, we should consider how well the families of the disabled cope.

Research shows that parents of children with a disability are much more susceptible to depression, marital problems, social isolation and financial difficulties.

Parents may begin their journey with a great attitude and the goal to raise their child to be as happy and fulfilled as possible.

But sadly this can be difficult to maintain after years of fighting for funding and support, a myriad of doctor’s appointments, having to explain their child’s situation on a daily basis, time away from their own careers and social lives and a variety of other daily challenges.

Then there are the underlying fears about their child’s life expectancy or how the child will cope independently when their parents are no longer around.

So it is not surprising that many parents battle depression and isolation and this can make it more difficult than ever to instill their child with resilience, optimism and a happy outlook.

There are also other challenges that a person with a disability may face.

For one thing, the support services available to those with disabilities are still quite limited, even in first world countries. Access to education and appropriate career-choices (as well as access to disabled toilets and other public facilities) still lags behind where it could be.

Don’t get me wrong, things have improved greatly, but there is still a lot to be desired in this area.

So, what if it is the dream of a disabled person to work in the food industry? What if they enjoy going out to fancy restaurants and rooftop bars with their friends?

The pursuit of a chosen career and chosen leisure activities is surely a big part of what makes us happy, so what if the barriers put up around this are incredibly difficult to break down?

It is definitely not impossible for a wheelchair-bound person to work as a chef but I would suggest that very few restaurant kitchens are set up to make this easy.

Likewise, it is not impossible for a physically disabled person to access many restaurants in big cities but there are probably just as many laneway bars, rooftop bars and hidden restaurants that would be extremely difficult for a person in a wheelchair or on crutches to get to.

And, this is not only relevant to those with a clear intellectual or physical disability, it also goes for those with milder learning disorders.

I have previously written about the challenges that students with dyslexia (reading problems) and dysgraphia (written expression problems) have when it comes to successfully navigating the education system.

Such students may be limited because their learning disorder makes it harder for them to achieve the grades they need to get into certain university courses and qualify for their chosen career.

The education system in Australia still relies heavily on assessments that require a great deal of reading and writing and are yet to come up with other reliable, consistent methods of assessment that would ensure an even playing field for people with learning disorders.

Those with a physical disability (without an intellectual disability as well) are often further burdened by being painfully aware of their struggles and having to battle to overcome depressive thought patterns.

While some of them are lucky enough to be able to enjoy some activity, others may be unable to use physical exercise as a way of managing their moods and this may make it harder for them to stay positive and optimistic.

And, things are not easier for those with an intellectual disability who may struggle to communicate how they are feeling and their frustrations. They are often unable to understand positive thinking strategies, set goals for themselves or discuss what they enjoy.

Of course, it’s important to remember that there is another side to the same coin.

Being born with strong bones, muscles and organs and being blessed with above average intelligence certainly does not mean that person is destined to be “happy”.

Some people go through their childhood and adolescence with very little challenges at all. They may not really experience major failure, loss or sorrow and they may be very happy. But when a speedbump does arise, they are ill-equipped to deal with it, they have little resilience or problem-solving skills.

The reality is that anyone can be susceptible to mental health issues, regardless of their physical or intellectual attributes, their living conditions and how much money they have in the bank.

Karni is right, we should all be wishing for a “happy baby” as this is no doubt more important than simply having a healthy baby.

However, we should be aware that the challenges of a disabled child are numerous and onerous. And they may require a lot of extra support in order to get to this state of “happiness”.

Karni was lucky enough to have a supportive family that gave her the opportunity to develop resilience and a positive outlook. For many, the support of the wider community, the education system, employers, and government support will enable them to get there too.

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