Once upon a time I had a little brother, David, who I adored and who adored me, my name was one of the very few words he could say. His development was slower and his features soon took the caste commonly associated with Downs Syndrome but he would sit for hours and play ball with me and as a kid that ranked a hell of a lot higher than the times table did. Sadly as he grew older it became more and more apparent that his development was never going to reach a level that allowed him an ease of communication or understanding that many of those he attended school with had.
Slowly over time he transitioned into care and finally into a group home with a number of other young men and their live-in carers. Despite being considered ‘low end’ on the scale of Downs David was rather good at getting his point across and usually made his feeling known when it was necessary. One thing that did cause some problems was his temper – a family trait I’m afraid, but for David it was more difficult as he was unable to learn how to manage and contain it.
One incident remains very clear in my mind however, although I’m sure my Dad might not see it the same way. David HATED people talking about him when he was present and would make noise etc to draw attention to his presence, which in my book is fair enough. Dad was chatting with one of the live-in carers and they were discussing something in regards to David while he sat on the couch glowering at them.
He got up and made a number of his ‘excuse me’ noises, then walked over to stand in between them as if to say ‘Ah folks remember me‘ and when that failed he decked Dad. I think he chose Dad ’cause he thought he should know better and didn’t expect much from the carer in terms or regard or respect [should have taken heed then I guess]. This did not lead to some major tussle as one might expect but simply a stern look from David, very much a ‘Do I have to make my point again look‘ and then he simply turned and sat down to watch the rest of the football game [he was a huge fan].
I use this instance as an example that although he did have his ‘issues‘ shall we say he also wasn’t out of control and yet for a number of years he was kept heavily medicated to the point of constant lethargy. Now I can see how that would be a much easier job to care for someone who didn’t really do anything but it’s not a life. Fortunately this did not last for long and the group home and his carers rallied around to give him a place where he could live without the chemical haze fogging his every move. It did mean having procedures and protocols to deal with various things such as medical treatment and sudden changes in circumstances [someone new coming to live there or the passing of one of the housemates for example]. Over the years there were also a number of tussles with young social workers either determined to be the one to ‘make a breakthrough’ with David or those who were determined that no harm came to him [not out of care but of legal ass covering].
Two examples from different young workers come to mind, the first being determined that David needed new stimuli to break through to him and engage him with the world. We did try to explain that he really didn’t care for the new and the different and had a way of making his feelings known. But being young, idealistic and much more qualified academically than our family [hmpf so she thought] she decided that taking David shopping in the brand new massive shopping complex that had just opened in town would be just the thing. Now things went smoothly, well he got out of the car and followed her into the shops at least, right up until they had a red light special in Woolworth’s. Well two aisles and a couple of security guards later she determined that ‘perhaps‘ she’d be a bit over enthusiastic in her approach. A rather chastened social worker bought him home where he stalked to his room and wouldn’t talk to anyone for about a day.
The second incident was a little meaner and it was one we lost. Those with Downs Syndrome have an issue with their vertebrae that can make it much easier to break their neck in a fall than it is for those who without the gene and it was this that caused the trouble. I grew up with horses and David too learnt to ride [well be led around on a horse] when he was young and for a number of years he would go riding on the weekend with a group of other disabled kids using a program run by a local pony club. Well when this young know it all heard about that she immediately put paperwork in to prevent him going, lest he fall and break his neck and we, his family, would then sue.
Well my parents asked if he could still continue riding and were told no, they offered to indemnify both the home, the carers and the club and were told no. Finally after offering to have a private riding day unconnected to the group home activity and paid for by our family and being told they would take us to court to prevent that we gave in. So David sat, nice and safe, on his behind watching TV when he used to go out for his ride. The same worker tried to ban him from jumping on the trampoline but Mum went nuclear [not something you EVER want to face] at what she saw was simple ass covering pettiness and somehow David was still allowed to bounce.
Sadly David passed a few months after my son was born in ’95. He never met him but carries him with him as I gave him David’s middle name of Anthony so he wouldn’t be forgotten. So for us the story ends and not a happy ever after BUT David did have a good life and I told the stories about his less than easy side as an example of how it can be difficult for those who care for people such as him as well as the difficulties of being such a person. I also told it to show how it is possible to treat such people with respect and care for their individual needs.
Sadly we seem to be going backward in our treatment of the disabled and are choosing medication and sedation as a means of control rather than working out protocols to deal with issues. Over medicating has a terrible long-term effect of depressing the respiratory system, add that to psychiatric medication that is often prescribed to those with intellectual disabilities and the massive weight gain that can come from that and you have a ticking time bomb waiting to go off in hundreds of bodies.
The right combination of panic, illness and sedation can end with death or coma far to easily especially if the body is already depleted by long-term cumulative medications that have huge negative impacts on the liver and kidneys. A horrible example of this is young Mark Roberts from South Australia, you can read his story by clicking this link and I’m sure you’ll be as horrified as I am that this is happening in modern society. According to Adelaide.com.now. news:
Government-employed care workers are shifting away from using orders that allow them to use only limited methods to restrict patients needing medical help, instead opting for much more invasive intervention. For Mr Roberts, it means he can expect to be sedated or strapped to an ambulance bed for medical care. Previously, he required only chips and chocolates to endure the process. Now, if Mr Roberts needs medical help and his guardian, sister Kathryn Roberts is not present, his supported housing carers say they will opt for the more restrictive approach. This means Mr Roberts would be put in an ambulance where he would be sedated or “netted from head to toe”.
Another horrible example of over-medication and hospitalization of those deemed intellectually disabled is the story of James Pascoe who was shackled to his bed for 14 days despite pleas from his family to the health workers and government for help. If you wish to know more of his story you can click the link here for more details but let me tell you they are not at all palatable and these are not isolated instances but merely examples of the callous disregard to those who need our care the most. This should not be allowed, it should not be tolerated or excused because these people are limited in how they can express their emotions. Those limitations do not mean that they are without feelings or that those feeling are as limited as their ability to express them. It is a disgrace to treat them as casually as is being done around this country and I’m afraid around the world.