Special Needs Kids Lose Their Rights

The arrogance or ignorance of the healthy.

I recently read an article written by a doctor in England who also has a chronic disease, where he talks about the “arrogance of the healthy”.

He says——-”It really didn’t help when people sent me magnets, elixers, and books on astrology, while other demoralising contributions were, this or that medicine and what I should have done earlier to avoid catching the disease, or various remedies and exercises to cope with or cure the problem.”—— “It is the unspoken belief of those who have never suffered from a chronic disease that it is somehow the patients fault that they have the disease”.

This is natural because people don’t want to believe that disease can randomly come to them. That somehow they can prevent it.

I am sure that most advice is well intentioned but I for one am growing tired of people advising me to eat lots of protein or other weird and wonderful foodstuffs (sort of along the lines of our health ministers take on fighting HIV) and join a gym when I can barely pick up a spoon to feed myself and would require a hoist to get me onto a gym machine. (No, not because I am overweight) but because I have little to no muscles where it counts. I am sure that most disabled people have researched every possible avenue in search of the mirracle cure, drug, diet or exercise. Not that we have suddenly become fountains of information but generally we are pretty clued up, after a while, as to what is good for us and what is not.

I am wheelchair bound, yes, but I am not mentally challenged or deaf, so it is not necessary to pronounce your words more clearly, speak slowly, shout or speak over my head to my care giver as if I’m not there.

It is a joy for me when people just offer to help and then wait for me to reject their offer or to tell them what I need, and in some cases, how to do it. There are times when I can manage “slowly” or when the maneauver is particularly complex and requires the help of someone who knows the procedure. We do need to feel comfortable and safe while carrying out certain drills, especially when transfering to or from the wheelchair.

In my short life in a wheelchair I have experieced a few problems that I would like to share with healthy friends that could help with communication.

Try to stand or preferably sit in front of the wheelchair. It is difficult to maintain eye contact if the person is behind or to the side. Craning the neck to look up is also very tiring.

Be careful with “advice”.  We have probably heard it all before. Most of us know as much and in some instances, with rare disease, we know more than our doctors. After having the disease for a while we would have exhausted most avenues of information in order to beat or subdue it.

Please offer to help. First offer, and then wait for directions. Most of us have a particular way of holding or doing things to suit our various degrees of disability. If you offer first you don’t have to run the risk of hurting or embarassing us or yourselves. Just be natural. In most cases we won’t break.

Over the years I have collected some thoughts from people that I correspond with from around the world (some positive, some negative, some sad) these quotations shed some light on how some of us feel at times.

• “You look fine” is only external. You have no idea how I’m really feelng

• I am scared about this thing that we know nothing about

• My biggest help was remaining positive

• This disease can control your mind. I want to be free of its power

• People around me have such perfect lives. I feel so alone.

• It is so hard to deal with this problem and live a normal life. I want so much to be as I once was

• If it wasn’t for the inconvenience and frustration of this damn thing it could almost be concidered an honour to be a member of such a small, elitist group.

• I thought I could handle anything but I never concidered this.

• The wonderful friends I have made make up for having this lousy disease.

All of us whether healthy or sick need support from friends and family. It only needs 2 people to start communicating and encouraging others to join and before you know it, you will be encouraging, helping and sharing advice with each other.

Roly Clulow

Technorati Tags: Arrogance, Astrology, Care Giver, Chronic Disease, Diet Exercise, Disabled People, Elixers, Exercises, Foodstuffs, Fountains, Health Ministers, Hiv, Magnets, Medicine, Muscles, Protein, Spoon, Unspoken Belief, Weird, Wheelchair

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