What is a wheelchair?

The whole concept of 'WHEELCHAIR' is much mis-understood. It is argued a wheelchair is an 'alternative to walking', or 'a wheelchair is for someone who can't walk', or 'a wheelchair is a mobility AID'.

All constructs are simplistic. A wheelchair is not about 'not-walking', a wheelchair is about 'living' , or rather 'not-living'. If you don't have one you simply cannot be part of the 'living'. A crap wheelchair is not about 'living', but is in fact torture. To be given a crap wheelchair by the HSE is abuse, is negligence, is dangerous and disrespectful. Its a breach of human rights.

Nor is a wheelchair 'just a bit of equipment'; a chair on wheels. it helps. NO again simplistic. Its not equipment, an object, it becomes, it's a living, vital, part of wheelchair users living being.  It being so, the body is enhanced, not diminished (unless the HSE decides all you need is crap), your body could be 'completed' with the RIGHT wheelchair. you can feel good again, part of the world again, part of the living. It's about EQUALITY not about disability!

It's a joy and a right. Precisely because it allows you participation once again...belonging, being, with ...your community.

So who uses a wheelchair? again simplistic answers. Those who CANNOT walk use wheelchairs. Right ...AND wrong too!

Yes, we all know those who acquire spinal injury or those born with spinal defects need to use a wheelchair. But this is not the full picture.

Many other people need wheelchairs.  Those with serious illness, they can walk but walking is difficult, or tiring, or just too damn painful. Those with fluctuating conditions, having good days and bad days. On the bad days a wheelchair is a must.

But too often society, communities are still ignorant. for many a wheelchair is only for the completely paralysed. Even doctors, occupational therapists, neighbours and family show complete mis-understanding of the wheelchair user.  We walk but only with difficulty, with pain, with hardship. Why because we have a rare muscle wasting/energy/parkinsonism/autonomic/metabolic disease. Plus arthritis and auto-immune diseases. REAL diseases. Here are some comments made to myself and my twin.

• "I saw them walking the other day they are NOT disabled" (written on a community facebook page where we live)
• "Why do you need a wheelchair when you can get up these stairs?" (A new GP to my sister)
• "don't bring your wheelchairs" (family member regarding a family event)
• "I heard parents at the school gates discussing whether you were really disabled today"  (reported to me by my neighbour)

So what is a 'really' disabled person? If you walk at all you are not disabled? Huh? Again, Simplistic. Disability spans a range of conditions. Some are 'dis-abled' by asthma, some are not. Some are 'dis-abled' by arthritis, some are not. Some are 'dis-abled' by spina bifida, some are not.

Some people in wheelchairs are NOT dis-abled, in the sense we use that word, unable (which is again a simplistic discourse). Whether you are disabled or not is a complex issue. for many disabled people they would argue the biggest dis-abling factor is NOT their condition/defect/disease but society's discrimination, beliefs, and negative views about them. Society's total disregard to allow them to work, rest, play within society. They argue they are not 'dis-abled' by their condition but by society.

It's become an issue to be judged by others. usually non-disabled people.  Non-disabled people largely decide whether or not you are disabled. whether or not you NEED a wheelchair. You are NOT allowed to say "I need a wheelchair".

You are not allowed say 'I need a living wheelchair', that means a GOOD one. The HSE do not supply a 'living' wheelchair. They supply crocks. This is discrimination. it is disrespect, it dis-ables you.

So folk, my message today.  Please educate yourself on what it really means to be a wheelchair user. It is not only about paralysis. please educate yourself about what the word 'dis-abled' means, it's not always about your condition, and often more about society. Please do not judge someone as not a genuine disabled, wheelchair user because you se them walk to the post office from the car, or into a chemist. This might be all they can do today.

As for the HSE, I have long ago lost all faith and trust in this evil empire. it is not there the serve. It's there to crucify. it does not uphold rights. the whole structures of this empire is to save money by not giving services . It crucifies both patients and the GOOD professionals within who really want to serve sick and disabled people.

But you the ordinary person...please don't add to the misery. 

a wheelchair is a right - it is my life - my living - my participation - my equality - my sanity - my being able.....alongside YOU!