Monday, 23 May 2011
Kelly Vincent Motivation Australia Speech
What does an appropriate wheelchair mean; and how do you get one?
Well, I am sure we all know this is quite a loaded question! I am not a physiotherapist or anything of that kind, so I cannot speak about the importance of a suitable wheelchair from a ‘professional’ perspective, so to speak. But I am able to speak from my own lived experience as a wheelchair user and disability rights advocate, and from my observations of other wheelchair users whom I have met as I make my way through this world.
As many of you are probably already aware, there are currently some twenty thousand people worldwide who need a wheelchair, but do not have one. And as you are probably also aware, my own ‘official’ journey into becoming a disability rights activist began when I unfortunately learned firsthand the ramifications of using an unsuitable wheelchair for an extended period of time.
Of course, I am not here to talk about myself, so I will only briefly touch on this chapter in my life.
I was born with Cerebral Palsy, and began using a manual wheelchair at the age of ten (twelve years ago). However, during my high school years, for the majority of the time, I used an electric wheelchair during school hours. After this time, however, when I returned to using my manual chair fulltime, it became apparent that I was beginning to outgrow the chair. I was approved funding for a new manual wheelchair in January of 2008, but did not actually use it for the first time until October 2009.
So what is an appropriate wheelchair? Well first of all – it has to ‘fit’ the individual and in saying that I mean it has to be suited to both the physical needs of a person and the environment in which they live.
As to physical needs, there is no such thing as a one size fits all wheelchair as Wheelchair users come in all shapes and sizes and have varied needs in so far as back support and the like.
There are many possible physical side effects of an ill-fitting wheelchair. Some of which I experienced myself including:
- Discomfort and pain
- Exacerbation of existing conditions such as scoliosis.
I, like the majority of wheelchair users am in my wheelchair for most of my waking hours. So when one has an ill-fitting wheelchair which causes discomfort and pain it is pretty soul destroying and not to mention downright tiring.
We generally feel pain because something is wrong. Pain is in effect our brain telling us that our body is in danger and to ‘STOP.’ So it goes without saying that continued pain over long periods is detrimental to our physical self.
As with a wearing a non-prescription pair of glasses for a long time, the side effects of long-term use of an ill-fitting wheelchair can be varied and long-lasting.
But of course, it is not only about the physical ramifications when it comes to an ill-fitting wheelchair.
Pain and fatigue greater than that which a person may usually experience due to their disability can often affect their potential to participate in work and social activities, leading to feelings of insufficiency, isolation and even depression.
The physical and emotional toll of having to constantly battle to acquire a suitable wheelchair also plays a part in this. Having to make seemingly endless phone calls to ministers’ offices and services providers, keeping track of all relevant information, searching for possible solutions to the problem can lead to feelings of exhaustion, frustration and hopelessness. This can of course also affect the family and friends, particularly the caregivers, of the person who is suffering directly – the domino effect can be deep and far-reaching.
And all for something as simple as a chair with wheels on it, although obviously we all know that it is something much more than that!
Then of course the wheelchair has to suit the environment. My wheelchair is suited to concrete pathways and paved roads and would not necessarily be suited to a remote community that has uneven terrain or lots of sand.
When considering an appropriate wheelchair, one must also be mindful about access to repair services. You could argue that in remote areas where wheelchair technicians are few and far between, it is important to have a simple to fix and robust chair.
So, how does one actually get an appropriate wheelchair?
Well, you can order and purchase your own wheelchair that suits your needs. Of course this is an expensive option which is out of the question for most of us.
So how do you get the Government to provide you with a wheelchair. Theoretically, you make an application to the Department, who assess your needs, measure you up and wa-lah you have a wheelchair.
But, as you may have gathered from what I have already said, in South Australia, it is seldom that simple and can often be a very complex and drawn-out process. Again, I am very conscious of not taking up too much of your time, so I will not list the reasons this is so in detail. But I will, of course, touch on the more general or systematic problems which can (and do) lead to these delays all too often.
Of course the most notable issue is the matter of funding. Disability services in South Australia have long been woefully underfunded, and as disability becomes more and more prevalent, the issue of underfunding is getting worse. The disability sector is currently in such a desperate crisis that it is seemingly becoming more and more difficult for Government to prioritise one group’s needs against another. And a lack of funding means that you have to wait for approval. While the Government has made some effort towards clearing the waiting lists for equipment, I still hear of people who are waiting.
And there is also, of course, the requirement to prove that a person needs a new wheelchair. Which is again a long drawn out process which does not necessarily take into account the changes in body or severity of disability, and without sufficient planning around what will happen after a person’s current wheelchair ceases to meet their needs.
Then there is mismanagement. A lack of communication between government departments and suppliers can lead to files being misplaced, and incorrect or outdated information being on a client’s file. So even if you have approval and the funding, you may still have to wait.
I must say that for South Australians in regional areas, it is much harder to get an appropriate wheelchair. This is clearly evidenced by the work that Mobility Australia has been asked to do in our own rural and remote areas. It is a very sad state of affairs when people in a country as rich as Australia have to rely on the non-government sector to access something as essential as a wheelchair. In fact it is not just sad, it is bloody outrageous.
So in summing up, an appropriate wheelchair is one that suits an individual’s needs, be they physical, emotional and environmental. And how do you get one – simple, make an application to Disability SA (or should I say Community and Home Support SA) then be very patient. And if you get sick of waiting, give my office a call.