As the electric current charges through my wrist my pain threshold is tested. It continues the longer the machine stays on. Just when I feel like I can’t take any more my beloved doctor says turn it off. I breathe a sigh of relief whilst being injected with an extremely long needle. I don’t know how many injections I receive because I am not in the best frame of mind to concentrate on anything. Soon enough the needle is removed, I am cleaned up and heading home, relieved I only require Botox every six months.
Afterwards I settle down quickly and then my father brings me back to earth. He tells me that it’s hell watching me go through that. With my father nearing 70 I am surprised by his reaction. In my mind he has seen it all and it’s not that bad compared to what else I’ve been through. So hearing this from him was the reality check I needed to get back to writing.
In recent years I’ve become clear about what my purpose is. I want to break down stereotypes to improve life for people with disability and their families. I have been reasonably committed to the family aspect because of my own experiences. Having said that it has been from listening to others that made me realise more needed to be done.
Let’s get the biggest issue out of the way early. As accepting as I am you are never going to hear prospective parents say if all goes well our child will be disabled. This doesn’t mean parents don’t love their children no matter what or who they are. It’s recognising that there is shock and depression that comes with families with disability. The impact and effects lasting a lifetime, as they should.
For starters medically there is endless appointments. It could be x-rays, operations, procedures, tests or equipment and that’s not giving it much thought. There is also no getting around it, particularly if you’re taking life seriously. Currently it seems like I have more appointments that relate to my disability than ever before. To ease the tension, I constantly joke that father son bonding time happens in the waiting room of hospitals. As compassionate as I am towards parents in similar situations I still consider this the easy part.
The most challenging part I believe is the eternal struggle. Families with disability find themselves in a world where they have to fight for everything. Whether it be getting an education or a supposedly routine family outing it’s made more difficult than it needs to be. The scrutiny you are put under for living life is absolute cruelty. There is the constant stares from society who make it seem they want disability to remain hidden. Worse still is to be continually asked that horrible question why would you want to do that? I don’t know what is more upsetting about this. The amount of times it’s asked or that it’s generally so called disability experts that it comes from.
This is why I find it incredibly unfair when families are seen as a hindrance to the progression of people with disability. In many instances this is true but it is an easy way to look at a complex situation. Parents want to protect and do what is best for their child. Faced with a relentless battle that shows no signs of ending I am never surprised to see families with disability jaded about it all. I myself admit that it would be easier if I just stayed at home.
So rather than just highlight the problem and in many ways only state what we already know, I thought I would offer up some advice. From the NDIS to all other disability services it gets down to what are you actually offering. Will you be able to lessen the stress/pressure on people with disability and their family? Are you going to be able to improve the lives of people with disability and their families? If the answer is maybe, please come back when you can definitely do this, we have enough going on as it is.
And as for therapists, planners and doctors try to remember that what you see is for a limited time. The more interested and involved you are the better life is. Usually people with disability and their families feel like they are working against someone. If you can demonstrate that you’re going to work with them you have removed a huge barrier.
Which of course leads to my final and favourite point. Imagine if the needs of people with disability and their families were taken more seriously. This could mean we end up having more time. This could lead us to spending parts of our week having fun.
Although there is probably a form that needs to be filled in to assess whether I’m entitled to have fun. Then I will be put on a waiting list and sometime in 2018 someone will visit me to go over how I intend to have fun. From there I will be told I can only have some of what I originally asked for. I will break the news to my family and we will shake our heads in disbelief, mostly because we should have predicted this.
For those that are unaware of how the disability sector works yes I am joking but no I am not exaggerating. That is pretty much what people with disability and their families go through on a regular basis.
And the sooner we get away from this the better. Something I’m obviously determined to do.
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