Category Archives: Life

Interacting with a wheelchair user – Wheelchair Etiquette

Say, you meet a person using a wheelchair, this is your first time and you are confused. You do not want to make him uncomfortable or hurt him in any way, also you do not want to feel awkward yourself. Ok read on,

Proceed as if you meet an able bodied person. The focus should be the person and not his wheelchair or his disability. Treat him as a independent, responsible individual. Only their legs or arms dont work, their brain and other stuffs should be in a better shape than yours :)

Respect the person’s space. A wheelchair is a very important equipment for its user. Its like a part of his body space. So do not unnecessarily touch the wheelchair. Hanging or leaning on the chair is similar to hanging or leaning on a person sitting in any chair. It is often fine if you are close friends, but inappropriate if you are strangers. NEVER rest your foot on their wheelchair.

Do not stare! A wheelchair user mostly has a pot belly[due to paralysis of abdominal muscles] and thin legs, these are not places of interest. Especially dont stare when he is doing ‘transfers’ [from car to wheelchair etc], as he can notice it, feel uncomfortable and lose balance.

A wheelchair user mostly can talk :) . Talk to the person using the wheelchair, not to his friend/carer/parent, on matters concerning to him. And make sure the talking is least about his disability and how he handles it.

Do not utter words like “your are great/brave”, “you are an inspiration”, “you will be rewarded” etc. A wheelchair user is just another dumbass like you. Ok agreed! not as much as you.

Do not jump to help. Always ask the person BEFORE you help, but never insist. It may not be needed or wanted. If he needs help, he will accept your offer and tell you exactly what will be helpful.

Don’t demean or patronize the person by patting or caressing them on the head or back. Strict no no!

Don’t be sensitive about using words like “walking”, “running”, “evening walk” etc. These words are part of everyday language.

Do not suggest treatments, doctors, therapists, healers, herbal medicines, cures etc etc…

Do not underestimate his capabilities. Most of them are capable of taking care of themselves. A wheelchair user is 100% capable of taking decisions for him. Your help is not needed here!

Do not offer your prayers and speak about stories of miraculous healings. If you wanna pray, go home, shut the door and do.

Do not assume that you know the best to help a wheelchair user. Do not advice or give tips to them on how to handle their daily issues or wheelchair. They have a much better idea than you.

Dont ask him to try harder so that he can walk. Can you correct your eye sight[eg myopia] by trying to look harder?

Don’t be one of those people who makes life difficult for wheelchair users, by putting your stuffs [like shoes, bag etc] on the way of the wheelchair user.

Never move the wheelchair out of reaching distance of its user when he is not using it.

If you happen to push a wheelchair; this is not an instance to show off your physical strength and speed. By doing so you will most probably injure yourself, the user and damage his wheelchair. Be slow and extremely slow and be careful not to bump against stones and other obstructions on the way. Inform the user if you are going to lift or make a sharp turn.

When lifting a wheelchair do not rush. Make sure you are holding on to the main frame and not on places like push rims, foot rests, arm rests or even cushions, these are removable and might break off.

Don’t classify a wheelchair user as ‘sick’. There is no disease or contagious stuffs here. Try to see them similar to people wearing glasses.

The wheelchair is not a symbol of tragedy, suffering or pity. It is a means of freedom that allows the person to move about independently and lead a fuller life. A wheelchair user is well comfortable with it. Do not assume that he is sad, suffering and his life is in waters.

Source: Most of these are from internet and the rest by me. But I’ve experienced all the above multiple times.

A bit more about me

I have a Spinal Cord Injury (SCI). SCI is an injury to the spinal cord and the most visible symptom is the paralysis of legs. Usually they are caused by accidents and falls, but in my case it is due to a bend in my spine [which is medically termed as Kyphosis].

It all started with a tumour in my spine (at T4-5) when i was 14. The tumour caused temporary paralysis of my legs and pain in the back. The tumour had to be removed by a surgery(called laminectomy) in the spine. This surgery involves removing some bone of the spine to get access to the tumour. The surgery was fine and i was soon back to normal. I had to do a course of chemo and radiation therapy as the tumour was classified to be malignant (PNET).
Although things got better, my spine started to bend at this point slowly. It was required to do a bone graft along with some steel rods at the time of this surgery to stabilize the spine. The hospital authorities were ignorant about this.

Fast-forward three years, now again I’ve difficulty in walking. MRI show that the spine is considerably bend and it is choking the spinal cord to cause neurological problems. It is time for a corrective surgery. The procedure is to graft and fuse the bending area. The surgery was done but it caused more problems than any good. The graft was not good enough and the spine started bending again(this time at a higher rate).
It was decided to redo the procedure. The procedure was a moderate success and at the same time an utter failure. It reduced the rate of progress of kyphosis(bend) but also resulted in permenant paralysys down the surgery level. The paralysis was not due to any mistake in the sugery but because of the loss of blood supply to the spinal cord after repeated surgeries. This was on 1999 when i was 19.

My SCI was classifed as T4-5 complete. I have paralysis chest down and i use a wheelchair since then. I do not have any sensation (ie feeling of touch, heat/cold and pain) or movement below that level. Also my bladder and bowels are affected (there is no volunteer contol or feeling). I catheterize 5 times daily to pass urine and use suppositories to move the bowels on alternate days.
Because of my kyphosis (spinal bend), i have constant back pain while sitting. I usually dont sit more than 3 hours continuously so that the pain doesnt get much worse. My vital capacity (breathing) is also considerably reduced because of the bend. Its the pain, breathing, bowel and bladder issues are my major problems and not the inability to walk as others think. Believe me, its not much of a problem if I cant run or walk, wheelchairs work really well!

Fast-forward ten years. I have a website now and you are reading this :)
My spine is still bending at a slow pace like the Leaning Tower of Pisa, and of late i have begun having some neuro symptoms with my hand too. Life is indeed a roller-coaster ride!
Over the years, i’ve gathered quite a few information about SCI from internet and also from my own experience. I hope to share them here.
I am okay with questions and if you have any, either about me or SCI in general, drop an email.

Email me at: tonyjjose#gmail*com
(replace # with @ and * with .)