06 June 2015 - by ~ 3 Comments

Guest Blog: Objects of Pity

Opinion

Chris FryerThe favourite topic of the late Australian comedian, Stella Young, who just happened to be disabled, was what she called “inspiration porn”. We have all seen those inspirational videos or pictures on Facebook that show people with serious disabilities battling against the odds to live a normal life. Stop feeling unhappy, this person doesn’t have arms, but they drive a car — with their legs!

This stuff is bad enough, but the opposite can be just as bad. Some disability charities will depict the disabled as objects of pity in an effort to get sympathy and therefore more donations. Some even go as far as deliberately misrepresenting the facts about the disability they are supporting.

I respect the need to raise funds to help people with disabilities and to pay for research, but I believe there are too many downsides to this approach. For a start, it is both dishonest and demeaning to disabled people.

Another issue is that hope can be destroyed in parents of newly diagnosed children or in children growing up with a disability. One egregious example you may have heard of is an ad for The Duchenne Foundation Australia. This ad shows a 12-year-old boy with Duchenne Muscular Dystrophy in a manual wheelchair. He goes on to tell the watcher that he went into a wheelchair two years ago, soon he wouldn’t be able to move — at all. There are no treatments.  The next shocking statement is that 100% of those with DMD do not make it out of their twenties. To somebody who doesn’t know anything about DMD, this ad is terrifying — that poor kid.

The issue is — it just is not true. I know plenty of people, including my brother, and myself who are over the age of 30 — they all have DMD. People with DMD will always be able to move something, as larger muscles are affected more than small ones. This means that people with DMD will likely always be able to blink, wiggle their fingers and talk. Sufferers of motor neuron disease aren’t so lucky.

Another huge problem with this approach is that, if somebody hears there are no treatments for a particular disease, it could stop them from seeking the treatments that actually exist. If a large charity says that something is so, wouldn’t you believe it? A less cynical version of me would. You should be able to believe what experts tell you. There are treatments for DMD, including steroid treatment that build up young boy’s muscles so they can stay on their feet longer and avoid having a spinal fusion, if they get scoliosis. There is also medication to slow down the onset of cardiomyopathy. Later on there is ventilation which is used to keep people with DMD breathing overnight and later during the day as well.

Sadly, in some cases when all these interventions are used, they still won’t be enough. It should still be the priority of large charities to let parents know about treatment that could potentially save their children’s lives.

Don’t get me wrong, I still hope for a cure, but you need to be alive to be able to receive a cure. You need hope and you need to look after yourself. It is difficult do any of this if somebody is giving you false information.

Ads like this contribute to ignorance in the community. If you are the parent of a child whose friend has just been diagnosed, you may try to prepare your child for when their friend inevitably dies — seriously damaging that friendship in the process. It may even result in bullying, “my mum said you are going to die soon!” and yes, I did once hear a child say that. I even had somebody in my class who tried to get everybody to dump me as a friend because it would hurt if I died.

People with disabilities aren’t a commodity to use and abuse to raise money. In fact, I believe this approach damages the reputation of charities and probably reduces the amount of money they do raise. When people are presented with very ugly facts, they tend to turn away rather than trying to stop it. Who hasn’t changed the channel when a UNICEF ad comes on the TV showing starving children — I know I have. I think if charities showed all the good things they do, they would probably raise far more money.

For example, the Duchenne Foundation that I mentioned earlier: They give families dealing with DMD access to vital information about the disease. They give them access to cough assist machines that can be vital in fighting lung infections. They hold seminars showing the gold standard medical approach for people with DMD. They help to extend the lives of people with DMD. So why does their advertising do the exact opposite?

Instead, charities should show what people with disabilities can achieve. We are just ordinary people living with a disability. We aren’t special. We aren’t objects of pity. We have just as much capacity to change the world as anybody else, and charities can help us do it!

About the author:

Chris Fryer is a 37-year-old writer / computer programmer / hacker / designer / entrepreneur / whinger from Melbourne Australia. He has an identical twin, Nick. They both suffer with Duchenne Muscular Dystrophy, use non-invasive ventilation 24/7 and a whole pharmacy of medication. Other than that, there is nothing wrong with them other than Chris getting sick of talking about himself in the third person. Chris is on Facebook and Twitter @ChrisFryer78

Chris and Nick’s website:

http://myrobotnstuff.blogspot.com.au/

  • I’ve actually seen thoughtfully constructed TVCs which nuance deadly realities by using imagery, pathos, symbolism etc. This is achieved in a way that targets adults who may experience a powerful message – but spares children who are still concrete thinkers, rather than exploiting them under the guise of having the best of intentions.

    Pascal described an interesting way man can be positioned to perceive his own human condition – anticipating a life lacking in real freedom followed by inevitable death: “Imagine a number of men in chains, all condemned to death, some of whom are executed daily in sight of the rest; then those who are left see their own fate in that of their fellows, and regarding each other with sorrow and without hope, wait till their turn comes…”

    One would think this vision would resonate with men with Duchenne. Aren’t the timelines and risks of inevitable death accentuated by having a chronic life-limiting condition? Maybe not. Incredibly, approaching your 5th decade was dismissed as if you were mistaken about your own diagnosis and shouldn’t take umbrage because you are lucky. But one of the things I respect about you and other DMD males, both older and much much younger, is that by your refusal to be other than yourself, undefined by an imposed expiry date, you take the cup of despair from your mother’s lips, from your peer’s lips, from my lips. You do not force us to drink it because you don’t need or want help ( as you’ve wisely written, explicitness has often the opposite affect) but because it is the right thing to do – considerate of the mental and physical health of all concerned. Good men do this, the best of men throughout history… and good parents aplenty nurture the divine in their children. You teach us to understand that there are worse things than Duchenne … and deceit and dishonor rate high on a long list of them. Stay loved.

  • Thanks Deb 🙂

    I personally think it is important to tell children what they have when they are diagnosed whatever age that may be. In my experience children cope with hardship far better than adults do – they may even help their parents through a difficult time, I’m pretty sure my brother and I did that for my parents.

    I actually think humans are designed to cope with horrible things that happen, it’s only read clinical attempt to short-circuit our natural coping and grieving mechanisms..eg forcing yourself to feel worse than you already do, forcing yourself to remember them every day.

  • I agree Chris, parents must be honest and answer questions truthfully, providing only the amount of information sought. It is a conversation had with any young child to explain the loss of an elderly relative or pet – that we are all going to die one day & usually it takes a very long time but just sometimes, it doesn’t. Our son never asked to spare us, but he knew. We picked this up from intermittent comments or hints – remarkably even before diagnosis. He knew from a very young age, exactly where all this weakness would lead one day! But this knowledge is not on a conscious, explicit, daily level. Families do not taunt each other continually with the maudlin vision of living on death row, waiting for the end… and neither should ubiquitous and frequent advertising. I’m not alone in observing this “taking a day a time” attitude, because social workers and many parents report similar as a coping mechanism.