Wednesday, November 23, 2005

Letter to the Editor

Letter to the Editor
To Whom it may concern
Dear Sir or Madam,
I would like to address the issue of discrimination against disabled people and their main carer (usually a wife, husband mother etc.). This is a Human Rights Issue.

My husband (now 55) became a Quadriplegic in January 1982. I was 28 and we had two daughters then seven and four. I am now 51 years old.

In the 23 year period since his tragic accident we raised our two daughters and they are now 31 and 28 and living and working in Sydney. I will never compromise their freedom to have a life. They at least are entitled to enjoy the freedoms and rights we were unable to access. There was much they were unable to do as children due to the restrictions of disability but they grew up kind, compassionate and thoughtful people and we are very proud of them.

Out of all this mess they are like the shining lights and we are partly responsible for their being such good people.

During this twenty three year period we have run continuously a small business from home and have remained self employed. We have and are politically active and expect no one to give us anything at all. We have learned that apart from all the fluffy platitudes of the advocacy groups that the Federal and State Governments spend our tax money on, there is no help out there for us and, no one cares at all.

In the last thirteen years especially my husband’s health had worsened gradually. He is an unlucky Quadriplegic as he endures levels of pain such that he now uses increasing pain killers such as used by people with Cancer. Bones are brittle. Nerves are compressed. His bladder will be removed possibly within the year because it has shrunk as much as it can. He has had a colostomy which helps with bowel pain. But this has also become painful. (Catch 22). Movement causes pain such as driving, so I drive carefully and avoid pot holes unlike the disabled taxi drivers!. He has other pain that we cannot locate and appears to be hypersensitive to feeling. Life is becoming increasingly restricted.

I love him deeply. He is the bravest and most ethical person I know, and leaves no stone unturned to help any family members if they need help, be it financial or just to talk.

Right now we are going through a “good patch”, which means he can actually get up in the morning and use his electric wheelchair. Last year he spent six months at one time totally bedridden. For a Quadriplegic to be bedridden means total helplessness. Every drink, every mouthful of food, every bodily function has to be performed by others. You cannot read in bed because you cannot hold a book or use aids properly. Because my husband suffers daily from Autonomic Dysreflexia, I began to hang the washing on the verandah line, because it was just too dangerous to spend time out of hearing in the yard at the clothes line...until I discovered a doorbell which he could use in bed...we were unprepared...which able bodied people would not understand.

During this time apart from the ‘help’ we hired ourselves I was it. I was it 24 hours a day, seven days a week and have been it since 1982 with almost no respite except for an occasional three or four days visiting our girls in Sydney, or seeing my sisters in Queensland, when one of them had a Cancer operation. Not exactly a holiday.

This in itself is a human rights issue. But I have long realised that no one cares about the carer, certainly not our MP’s, certainly not Government organisations nor society in general. Call me ‘ol cynical’ but I think my 23 year experience qualifies me. It takes a lot less to become a priest or lawyer or mathematics professor. But I will only emerge qualified to clean toilets and sweep floors.

Okay now to the crux of all of this. My younger sister aged 41 is battling cancer. If that were me, and it could easily be and may be one day, what rights would my husband and I have? Would the Government step in and take care of my husband if I was dealing with the devastating levels of Chemo therapy my little sister is? I doubt it. Would the Government put into action some ‘plan’ which would enable my husband to maintain his autonomy in his home were I to die from my cancer ...or get hit by a car tomorrow? All this is own father died this way aged 49.

What rights...after a life time of taxpaying does my husband have? He would not survive a nursing home for the aged as he is very independent and loves his independence of mind and ideology which he is entitled to.

That is HIS human right.

I don’t have any rights really but I would like to have the right to know that if I died tomorrow, my husband’s autonomy would be protected and the Government would set into motion a series of plans which would cover him and allow him to do without me...but in his own home....even with nursing care this is far cheaper than having to put a 55 year old in a nursing home meant for 80 year old infirm. (poor buggers)

I know that our daughters would sacrifice their own lives to protect their father. But they have not had their own children yet and it would be such a disaster if this were to take all of that away from them. I doubt my husband would allow himself to live if this happened.

We don’t want much really. We just want those who are “comfortable” and think that they are in control of their lives to imagine a sunny day in January 1982. To imagine a young blonde; very handsome young man at work, in the canal estates at Port Macquarie...imagine me...his young wife, arriving home at mid day with two little girls (school holidays) after an exercise class and coffee with a long time girl friend...imagine her finding her husband’s employer there at the little old house they rented...for $15 per week!! (paradise)...and imagine what it all meant from then on.

No one of us is immune from devastating disability. Walk out onto the road...go for a swim...fall off a step ladder Whatever!

Does an accident mean we are no longer a part of the human race...have no rights...are somehow “less than...”?

What separates you and me form “them”...just luck? Just fate? Just being there...or not?

Who is it that is so sure of themselves that they think they have more right to Government and society’s assistance than those who are suffering pain and illness?

My husband loved to Surf. He had a horse called Lucky...a palomino. He was the funniest and best father our two girls could ever have and they actively know this. Our family ‘stirs’ a lot. We accept that no one actually gives a damm. We accept the cruelties we suffer...society in Australia is very cruel ...for the disabled and the people who really love them.

Human rights...we have none. The disabled have none. The primary Carer (unpaid) sin...whatever! None of us have any human rights.

Yours sincerely
Therese Mackay


Unknown said...

Your letter is an outstanding description of accomplishment that most sorry saps in this world couldn't even begin to comprehend or lift a finger to try. Bravo to you and Don and girls. I agree with you about humans with disabilities. First and foremost, we are humans first--our disabilities come second and your letter proves this without a doubt. I am so sick of the discrimination that continues to go on today toward our fellow man with a disability. Itr's not about color, gender, race, religion....they all get their civil rights...but those who's ability is different--forget it. Hide them, institutionalize them, forget about them and maybe they will go away. Yes, I love the schools today even as they put "THOSE" kids in classrooms way off on the other side of the school grounds. It is sickening. You have a supporter wqay up here a zillion miles away, but I know what you are going through. When my sister was born way back in the 60's, the doctors told my mom, "She is a mongloid. don't let her siblings see her. Better send her away. Nothing can be done with children like these, you know." Not much better almost 50 years later, is it?

I don't go out much these days. I'd rather stay home with my Corgi's and hubby and try to work from home like you. I haven't found much in the human race I am interested anymore. When my mom died from cancer back in 02, she was pushed aside because of her age. She was 74 and they figured she had lonf enough life. The hospital actually made her life worse the last month she was with us. I wish I could have helped her more and a better daughter to her then. I wish I could have done a lot of things better. Hind sight is glorious. But like you, what is in store for the future for our loved ones who depend upon us? If you get an answer from your paper or others, be sure to post it. Blessings and miralces, may your days be filled with them! cs

Amy said...

I’ll admit, I’ve sat through many a social ethics class… even sat through a couple of medical ethics seminars… all at university, mind you. And I’ve just realized, as I sat reading your very poignant account of your family’s experience, that in just those few words you’ve given me a perspective on the intricate, tedious, frustrating details of such a life-event that certainly no book or lecturing professor could have ever provided. I simply don’t have the experience, and am not haughty enough in the first place, to start spitting out platitudes and insipid, insidious snippets of propaganda from here in the States. But suffice it to say – ask one person running for office their take… you’ll get peaches and cream and nothing could be better – and oh, what plans the future does hold. Ask somebody who has been dealing with the reality of such an experience for twenty-three years and they’ll paint as horrifying a tale as I am sure you can. (Of course, go ask the sorry ask bloke who just doesn’t see fit to get a job and is collecting a well-fare check and see what he has to say… you probably won’t catch him though, he’ll be out lunching or driving about in a new car).

Thank you for posting,

Anonymous said...

Oh Therese, what can we say? All we ordinary folk can do is extend a virtual hand across the oceans and hope it gives a crumb of comfort.