Thursday, May 31, 2012

I'm not dead yet!

Today I'd like to deal with a common misconception.

The myth I'd like dispel is the one that disabled people ALL have diminished lifespans due to their disability.

There are of course, many disabilities that come with innumerable health complications. That includes CP in some instances. Many people who have the disabiltiy of CP also have feeding and digestive issues, communication issues, epilepsy and asthma to mention just a few. Mr A does not.

There are other disabilities such as Muscular Dystrophy, Multiple Sclerosis, and Motor Neurone Disease, which sadly, do lead to a diminished lifespan and my heart goes out to families and their loved ones who are affected by these.

Mr A is not affected by such issues and for that I am eternally grateful. I used to say that to my Mum when she was still alive. She would shake her head at the sadness of her grandson having such a 'terrible disability' and wondered how I could make light of it at all.

But that's the truth of it. Mr A's physical limitations do not affect his health and wellbeing and he is actually a more healthy specimen than I, by a long shot. He doesn't and won't drink alcohol, smoke cigarettes or take illegal substances. He can't, and he doesn't want to anyway. Oh...and I don't either, just to clear up any confusion...he-he!

Not for us the worry of where our 21 year old is at night or what he's up to. We know pretty much where he is all day every day.

Barring some terrible accident or tragedy, Mr A has the same life expectancy as the rest of us. Long and happy, one would hope.

This is the case for many people with a disability.

So if you're reticence to befriend, work with or socialise with a person who is disabled is influenced by an idea that you'll have to deal with their passing, then put that concern aside.

On the other hand, if you DID socialise, work with or befriend a person with a life limiting disability, there may be much for you to gain, and a great deal more to contribute.

People with all kinds of disabilites, life limiting or not, still deserve the experiences the rest of us take for granted. Love, companionship and simple human touch.

Instead, they often get the reverse. Ignorance, loneliness, heartache and disappointment. The impact of those things on the human race are well documented. And mostly that's in relation to the able bodied amongst us. Consider how those elements impact on someone already limited by their disability. It's very sad, isn't it?

So, please don't pre-judge. The fact that someone is disabled and 'might die soon' is not a valid reason to ignore, ostracize or segregate them. ALL of us 'might die soon'. We don't stop living life, making friends or falling in love based upon that premise.

Bring a disabled person into your heart and home. Take the risk and apply for a job as a Personal Assistant or Support Worker. I promise you'll get as much or more from the experience as they do.

Sunday, May 13, 2012

A different 'normal'....

Mr A is a great guy.

He considers himself so normal, it's ridiculous. Sometimes he's so convincing, I almost expect him to rise from his wheelchair, point at me and wink and go 'ahhh...gotcha'...before cracking up laughing. That would be  a 21 year old joke on me!
Remember that Mr A has Cerebral Palsy Spastic Quadriplegia, so that scenario is unlikely to say the very least.

He loves dining out and is a real 'foodie'. He can pick storebought lasagna from homemade with his eyes shut. He loves sport and is a walking...sorry...wheeling sports encyclopaedia. He likes doing what other guys his age like doing...perving at girls, talking about girls, tryng to come up with ways to meet/impress girls, and making meet girls. He wants to travel, have his own business, work on getting a 'six-pack' (abdo muscles) impress the girls, and take Japanese Language Lessons. In short, we try anything and everything we can, to make sure he has very normal life experiences, and has the conversational topics at his disposal that we all do.

When I recently raised the topic of Mr A starting up a business with my husband, his first reaction was 'but he's not going to make much money out of that' which I replied 'does it matter??'. The thing about having a business, is that it's a talking point...and equaliser. Now when someone says 'so what do you do Mr A?'...he doesn't have to say 'I'm on a Disability Support Payment'. He can say 'I have my own business'...and he's off. Talking being one of Mr A's strong points :P

This, I think, is one of the reasons he is living independently with such cracking success.

From a very early age, he saw his brothers, older by 10 and 11 years, study, move out of home and lead lives very separate from ours. So, for him, that was 'normal'. He then had an expectation that he would do the same.

Whilst this was a terrifying thought for me, particularly, we had to accept that for his long term future, this was the most sensible prospect. We had to face our own mortality within that picture, which is never easy, but for parents of a disabled child, this must be done. Our greatest fear is always 'what will happen to Mr A when we are gone?'. The best way to ensure that his life without us, remains as close as possible to the life we want for him and that he wants for himself, is to put that life in place while we are still around to guide the process.

Our path to helping Mr A live independently has been frustrating, exhausting, excruciatingly slow sometimes, eye-opening, time consuming, life altering, and ultimately, exhiliarating. We always knew we weren't just doing this for our guy, but for all the other young men and women out there like him, who also expected to live an equal life to their peers.

We have lobbyed politicians over many long years, bombarding them with mail, email, phone calls and threats with legal action, armed with the United Nations Covention on the Rights of Persons with Disabilities, which you can read more fully here.

This was actually a very important tool for us, and I believe, entirely instrumental in our success. Certainly our Prime Minister and her underlings jumped when we waved it at them and threatened a Human Rights Action. Were we blinkin' betcha we were.

Fortunately it didn't come to that, and strangely we set some sort of record for the length of time Mr A spent on a Community Housing waiting list....a short and sweet six weeks!

In fact, in the end it all happened so quickly that we were largely unprepared and were caught out on many different levels.

But we knew it was an opportunity not to be reckoned with, so we went with the flow. We learned much and things haven't always gone smoothly, but here we are, two years later, with recurrent funding approved to support Mr A (again only won with a long hard and bitter battle) in his lifestyle, and the family managing his funding to make the best possible use of it.

If you'd told me three short years ago, that we'd be where we are now, I'd have laughed and called you a fool.

But it just goes to show that slow and steady wins the race.

As for Mr A, as he approaches his second anniversary in his own place, things couldn't look better. He has a wonderful team of Personal Assistants, three guys his own age and one more Maternal lady to keep things on an even keel, and everyone is dedicated to seeing things move forward in the most positive way.

Not enough is done to encourage young male workers in this field and I can only credit Mr A himself with attracting the right sort of people. The three guys we have are worth their weight in gold and I pinch myself every day that things have gone as well as they have. The manner in which two of the workers came to us can only be described as Serendipitous in nature, and to get the 'in' joke there, please visit Serendipity Cafe.

Brenton came to us by way of a 'blog' friendship I formed with his Mum...and who would have dreamed five years ago that THAT could happen!

The second young man came to us through Brenton, and is a nursing much more perfect could it be?

Both guys are dedicated, enthusiastic, and more importantly, Mr A values them as friends.

And perhaps that is the most important of all.

Make plans, move forward, have an equal life mapped out for your loved ones. Don't let their disabilities restrain you or them in your thinking. Allow them to live the best possible life they can.

Dream big for your disabled children. If you don't, no-one else will.

Parents are the only ones who can enact change. Don't fear politicians. We know that they are just humans like we are. Lord knows some of them only barely fall into that! Lobby, argue, rant and rave, call current affairs programmes and newspapers to engage them in your story, write letters, send emails, and most importantly, have a PLAN. And work slowly and steadily towards it. Be informed, follow politics, both local and global, be informed, arm yourself with success stories like ours.

You can achieve the 'impossible'. We're living proof of that.