Tag Archives | cure

This person thinks that disabled people have no right to refuse a cure or treatment

Imagine you’re talking to a group of people about disabilities. One person says to you that disabled people should be force fed what ever cure or treatment is available so that their hard earned tax dollars are no longer burdened by having to support those people.

What would you say?

“No moral right to refuse a cure”

While in a heated discussion on a blogs comments, two people exchanged opinions where one person, nicknamed “taxpayer” replied with this:

M@”Does focusing on access barriers rather than cure make a wheelchair user less of a stakeholder in discussions re physical disability?”

From my taxpayer perspective the answer is No, they don’t have a right to be there. No one has the right to refuse a cure or a treatment that would make them less needy of state-sponsored services.

I would much rather see my tax dollars going towards a CURE, I would rather be paying to ERADICATE autism than paying for your wheelchair access barrier and many millions of wheelchairs to come.

So yes, unless a disabled person is financially and physically independent they do not have moral right to refuse a cure or treatment. And they especially don’t have any right to sit on a panel that was created to COMBAT that disability.

Sorry, I’m not going to link to their blog so you will either have to find it yourself to get full context (does context really matter for a statement like this?) or just take it for what it is.

money vs moralsTo paraphrase, and I don’t think I’m far off here, is that this hard working taxpayer feels that their valuable dollars are going to people who would rather keep needing more tax dollars than be cured and stop costing the system money.

From a strictly greedy, selfish, inhuman and egotistical point of view, this reasoning is actually quite understandable.

Still though, it doesn’t explain the “moral” part, does it? What does money have to do with morals? What does saving a buck have to do with morals?

Allow me to paraphrase once again, keeping morals in mind, just so that I can make better sense of this: “You and/or your child should not be allowed your basic rights nor have freedom of choice as it interferes with my wallet.”

Morals? All I see is irony.

How to respond? Let me count the ways!

So I got to thinking about how I’d respond to this person. I know from past experience that any response, no matter how articulate, compassionate, informative or insightful would basically fall on deaf ears. Excuse the disability pun. And the irony. Again.

I decided to do away with responding from my heart. I figure that this person would actually require one to be able to understand, much less relate to, my thoughts on the subject.

Instead, I figured it would make far more sense to appeal to their tragedy. They are obviously very hurt by this.

So here is my response to Mr or Mrs Taxpayer.

Dear “Taxpayer”,

My child was born with a disability and our entire lives are affected by it. There’s going to be some struggles just about every step of the way and yet we never get down or negative about it because we just love him so very much.

But please, tell me about how burdened you are by paying the same taxes I am. That must be devastating for you. Is there anything I can do to help? I hate to see you suffer so.

Sincerely,
A taxpayer too, but with a heart.

I would love to hear your responses to this person. What would you tell them if you could say just one thing to this person?

For more on this:
The disabled don’t have a moral right to refuse a cure or treatment?
You have no voice

Comments { 4 }

Being accepting of autistics that wish for a cure for autism

A recent news story, filled with a lot of science and interesting information, also included the insight from a man with autism, named Jeff Hudale.

You can read the news story here, in fact, I suggest you do: What’s Different About The Brains Of People With Autism?

Now, the science behind the story and the things that they are finding out about the human brain, specifically the differences between the typical and autistic brains, are really quite amazing.

But I would like to focus on the very last part of this piece, where Jeff Hudale states:

“I don’t want to quit until they finally can get this set right and get this thing eradicated,” he says. “I’d like to have some semblance of, just be a regular person like everybody else.”

There’s been a lot of talk about this through out the autism community but despite the attention it’s attracting, I see very very little (none to be honest) support or even acceptance of his feelings.

The general consensus that I see from people is that it’s sad that he feels this way and that he’s simply confused. That somehow it’s the life time of bullying, judging and other messages he receives either intentionally or unintentionally, that has caused this man to think of his autism in such a negative light.

There’s a lot to take in there as you begin to wonder if his parents had pushed for a cure or treated him differently because he was “broken.” Keep in mind, at 40+ years old, his diagnosis came at a much different time than how things are today.

Was he raised to be proud of himself or to always be aware of his differences. Did he read a lot of what the media had to say about autism and reflect those things inward?

Did years of bullying or lack of friends cause him to hate autism for making him the way he is?

Generally, it comes down to outside forces.

Put it this way, when we generalize his reaction into a “who said what to make him feel this way”, we are sort of dismissing him entirely and “putting the blame” on others.

That’s a nice way to look at it, to be honest. It means there is nothing wrong with him, it’s society that got to him and made him think this way.

However, the “nice way to look at it” isn’t always the honest way to look at it.

See, I like this news article because it’s honest and real. He is not the first autistic I’ve heard of, or even talked to, that has expressed a desire to be rid of autism. Or to use the “fighting words” version… to be cured.

I think, and this may just be me, but not everyone needs to “just accept it” and “just be proud of it”… some people don’t and never will. They simply wish that they do not have autism.

While it’s not the approach I take nor is it what I suggest, as it is obviously negative and self defeating, it is a reality.

not okIt’s a reality that should not be hidden or ignored.

Sure we could just say that Mr. Hudale should just be happy with himself despite what anyone else thinks but that’s what we think of his life.

That might not be so easy for him to think, nor is it a requirement. We can’t just demand that of him.

Wouldn’t that be more of the “stop thinking so differently and conform to what the rest of us believe!” mentality anyway?

Besides, this line of thinking ignores the simple fact of what autism really is… a disorder or disability.

There are a great many struggles, heart aches, things you can’t do, negative messages and so much more that you have to live with for your entire life when you have autism.

Some examples for some autistics include never going anywhere loud (concerts, subways, movies, etc), never being able to play sports, never being able to make friends and the list goes on and on. I couldn’t possibly list every possible thing that autism could limit or cause you to never experience at all.

There is just so much negative in life that comes with having a disability (or disorder) that it would be a bit naive to assume that it’s only due to bullies or other people that a person would wish to not have that disability.

Now, I’m not saying that it’s never the case. I think it’s safe to say that some people do hate autism or what ever disability they may have simply because of how it causes others to treat them or how others look at them.

Perhaps some of those people could grow to accept and maybe even love having autism if only people were more accepting of them.

But I think it would be a stretch to think that is true of every single person.

Some people may just wish to no longer have autism because they simply do not want to have autism. No matter their age, no matter what others say or do, no matter what you or I think they should feel… they just don’t want to be autistic anymore.

And we need to be accepting of that too.

Acceptance means we that don’t judge people for how they feel or what they think whether or not we agree or even understand it.

That goes for people who are not proud of having autism. Not just the people that are.

Let’s talk to them. Not ignore or dismiss them.

Comments { 15 }

Parents are now forcing their children a bleach enema to “cure” their autism

In a mystifying case of “What the hell is going on?!?!?”, some parents are now taking to bleach as a cure… forcing their children to have a bleach enema to clean the autism out of their system.

I’m not the best at getting into the nitty gritty details and besides, these two sources handle it far better than I can. So if you have the stomach for it, check out these links and read about MMS or “Miracle Mineral Solution”:

Bleaching away what ails you
MMS, or how to cure autism with bleach. Brought to you by AutismOne

Please be sure you read those, or at least, some of those articles, before proceeding.

bleachSo very wrong

How in the world can a person go from “trace amounts of toxins in vaccines, too small to see, are harming our children” to “here honey, let’s put this stuff in you that CAN KILL YOU!”?

I just can’t fathom this way of thinking. I mean, how desperate can a person be to forcefully make their child sick? I mean, there’s a good risk of outright killing the child and yet this is somehow worth curing autism?

How badly must a person hate their child that they force them to drink bleach?

Please please please PLEASE don’t ever have bleach anywhere near your child! It doesn’t matter who tells you try it… just don’t!

Abuse is abuse

A recent news article surfaced in which two people kept their two children in a caged room, without clothing or anything, for up to 16 hours a day.. and they were charged for it. They were found not guilty in the end, but a LOT of people felt that it was abuse.

There are many more cases like this, such as a school that placed a boy in a box for several hours because he was pacing and not listening to his teacher.

People scream “This is cruelty!! This is abuse!!”

Then, some of these people turn around and give their child a bleach enema??

I just don’t get it because to me, forcing this bleach thing is far worse than putting them in a cage. It’s much more a form of abuse since it does them physical harm (not to diminish the effects of psychological harm done by imprisonment).

I just don’t get it

Anyway, I just don’t get how a parent can get mad at doctors for putting harmful substances into their child and then put something so very obviously dangerous into their child themselves.

I also don’t get how a parent can hate the hurtful things that others do to their children and then turn around and force bleach into their child, something that can kill them.

I also don’t get how this is legal. I don’t get how these people aren’t being arrested for this. Is it because a doctor told them to do it? Does that make it ok?

Because I don’t think it does. I don’t think it matters who tells you to do it, putting bleach into a child is wrong.

If I saw a parent doing that to their child, I’d call child services on them immediately and demand that the child be removed from their care.

I’d also be phoning the police.

I don’t care what doctor told them it’s ok to do it.

That’s just how I am.

I just don’t get it.

Comments { 8 }

If you could turn back time and undo the Autism

If I could snap my fingers and become nonautistic I would not do so. Autism is part of who I am. – Temple Grandin

This topic tends to come up a lot and tends to cause some tension between people when really it shouldn’t. The truth is that, just as much as Autism is a spectrum, so are the thoughts on whether or not to cure Autism.

I mean, obviously there’s really only two answers.. yes or no… but the reasons for these answers are quite wide ranging. And none of them are wrong.

Understanding the reasoning

There are some people who benefit from the way their brain is wired, becoming known as savants. They are extremely gifted in math, music, art… usually one specific thing out of a wide range of abilities.

However, that’s not usually the case. Still though, many Autistics and even parents of Autistics feel that there is nothing to cure. Autism is a part of who they are, who they will be and is perfectly natural. Yes, it may present some challenges but removing their Autism would be like removing their sense of humour, or their unique way of thinking.

Sadly, this isn’t true for everyone. For a very large part of the Autism community, Autism is a very real disability that renders a person unable to speak, function… live an independent life. It can make a person very aggressive, fearful and even, as some would call it, locked in their own world.

For people like that, for the people who have to make the hard decisions on behalf of those people… it’s quite easy to understand why they would want a cure. It’s quite understandable that they’d see very little to no benefit of having Autism and would never hesitate for a second in wishing they could go back and take it away.

These are just some examples, as I said, there’s actually a LOT of reasons for answering yes or no.

None of this is really new to anyone, however it should be pointed out that a big part of understanding and acceptance also includes doing so with each other. We can’t judge and condemn those who would choose differently from us when their circumstances are very different from our own.

When my wife asked me

who am iRecently, my wife asked me “If you could turn back time and go back to under Cameron’s Autism, would you?”

My first reaction was, and I’m sure if you’ve read my blog for a while, you’d agree with this: “Have you met me?”

The truth is though, from a strictly curiosity stand point… like, let’s say there was a preview button, where you could simply see how different your child would/could be without Autism… I’d love to hit that button and see.

But would I remove the Autism? Or, to put it another way… would I take Autism away from him?

The answer is no. I would not.

I believe, for me and for Cameron anyway, that he’s actually doing very well and will likely have a good life ahead of him. It will likely be filled with his fair share of struggles and maybe even some very depressing moments… I know my life was… but I think he’ll turn out just fine.

The thing is, I do believe that Autism is a part of who he is. It shapes how he sees others and the world around him. It shapes every bit of the input that he takes in as well as his output.

It will give him unique insights into the world, a very different point of view.

For better or worse, the struggles and turmoils that he’ll very likely have to endure, thanks to that Autism, can make him a stronger person.

With proper guidance, lots of love and tons of encouragement… he can learn to focus the negatives into positives, in time. He can learn that all the greats throughout history saw the world differently, it was that gift that made them great.

And those people were outcasts, they were seen as different.

Would I go back and remove Autism from him if I could? No. He has the potential to be great with or without Autism. He has the potential to overcome any adversity that life presents him.

You may feel differently than I do, I can respect that. It’s a personal opinion that each of us makes for different reasons.

My answer comes with a responsibility

I say no because I believe that Cameron can be a wonderful human being because his potential is limitless.

I also say no because I dedicate my life to being there to help him up when he’s down, to help him see the positives in the negatives, to help him recognize the opportunities and to help him learn how to break down the walls that try to get in his way.

And I know that my wife, his teachers and the people that we have in our lives will support Cameron in the same way.

The reality, the way I see it

One day his dog will die, one day he’ll have his heart broken, one day he’ll feel very alone, one day he’ll have financial trouble….  one day, me wife and I won’t be here any more.

And as much I’d like to protect him from all of that… I can’t. And I shouldn’t. These things are a part of life and these things can build character or ruin a person. They’re the trials of life.

And as much as they suck, they’re a part of life.. and for Cameron, that includes Autism too. For all it’s benefits and even for all the incredible drawbacks, it is what it is and protecting him from it would be taking away a part of who he is and who he has yet to become.

Comments { 4 }

How did ‘cure’ and ‘acceptance’ get to be such bad words?

It’s no secret that the Autism community is quite divided on many topics and I’ve even written before about how easy it is to offend one side or another depending on what you say.

For the last 4 months, I had been trying to organize a rather large campaign to get as many people to write about “Understanding and Acceptance” for those that live with Autism every day.

It’s done well but has perhaps also added fuel to an already hot topic. One that has turned two very good, very positive words into opposing sides of a war.

Cure

This word is often used in finite terms, such as how antibiotics can kill a virus or infection and leave you without a trace of the offending agent of illness.

The issue here is that many people with Autism (especially Aspergers) and even those that love them, feel that autism is a part of what makes a person the person that they are. It affects every aspect of their life from birth to where they are today and to remove that would be like removing a part of who they are.

When a loved one (usually a parent) is presented with a child that is “low functioning”, they would love nothing more than to cure their child. Some children (even those that are of adult age) are unable to speak, use a toilet, live independently, they hurt themselves, wander off with no idea what they’re doing or where they’re going… they’re unable to express themselves, their feelings or desires.. they’re trapped.

What results is the people from group a (Aspergers/high functioning) often resenting those from group b (lower functioning loved ones) for wishing to “remove” a part of their children. They consider it quite offensive to think that Autism is an invasive illness that needs removing.

Acceptance

Acceptance is the cornerstone in giving women equal rights, abolishing slavery and in squashing racism… it is therefore considered necessary to give those that are different a chance to co-exist as equals among those that are “normal.”

Many people view Autism/Aspergers as a gift, an ability to think and visualize the world in a very different way from a person without it, however, it also comes with some complications in that their senses may over load them, they are unable to socialize as easily or effectively and may need some “allowances” from people such as added patience and understanding in both their professional and personal lives.

Should people learn to accept and understand these differences, not only could those with Autism/Aspergers excel but may be able to excel much further than anyone has before them in their field!

Well, the problem is that it’s all well and good for those that can work, those that can socialize even if only a little but for those parents/loved ones who witness their child being bullied, beaten, isolated and even institutionalized because they don’t even have a chance at acceptance since they are unable to truly interact with the world to begin with, acceptance is not only impossible but it’s a source of anger.

Those loved ones don’t need anyone to accept their child. They need for their child to learn to talk. They need for their child to learn to use the toilet. Acceptance, to them, is like expecting a bird to be able to fly before it even hatches from it’s egg… much less grows it’s feathers.

They can’t even think about acceptance because without a cure, there will never be acceptance… and if they had a cure, why would they need it?

Conclusion

bad words

bad words

The disconnect here happens because people view the world in black and white… there is their world, and then… well, that’s it. Their world. You can’t blame them if it’s someone they love, especially a child. You very quickly learn to not care about other people’s rainbow coloured happy places when you want your child to simply have a chance at a normal life and people attack you for it.

Likewise, you can understand how someone, anyone really, would get upset when others think that you should have a part of yourself removed because they don’t think you’re good enough the way you are. If you have any self worth, any self confidence, you are more than happy with who you are and don’t care what anyone else thinks.

The thing is, there’s a world beyond our own and we can’t push our world onto other people. What someone wants for themself isn’t necessarily a reflection of what they want for you… or how they view you for that matter.

One mother that wants the autism out of their grown, non verbal child doesn’t necessarily want the autism out of a 12 year child that has a higher IQ than Einstein.

Likewise, I’m sure most people with Autism/Aspergers that can fend for themselves would never want a parent to have to take care of their child forever.

These are not bad words and certainly not a cause for hatred. We just have to stop taking things so personally. We have to learn to accept that there can be a compromise.

A new way to think about old words

Perhaps a cure doesn’t have to mean “removing all” and instead can mean “removing the barriers”… implying that they’ll still have autism but maybe now they can talk, leave home, hold down a job and start a family of their own.

Perhaps acceptance doesn’t have to mean that the world just says “well, they’ll never talk.. accept it” and instead means that the world accepts that there needs to be a change in priorities, a change in how funding is not available, a change in how parents feel so alone with no where to go.

The world isn’t black and white. And the world isn’t just about you. We can co-exist… and understand that people want what they want and that they have their reasons for wanting it.

Don’t be so quick to judge, don’t be so quick to get defensive. A cure is not a cure for all and acceptance isn’t acceptance for all. Either support each other in their goals and desires or don’t. There’s no reason to hate.

Comments { 9 }