Disability: Concentrating on the person and not the disability

This hub is a semi personal one. It does not relate to a disability that I have but rather to my late mother. I would like to draw on some of my memories of how life changed for my Mum after she suffered a series of health problems, and a cerebral hemorrhage, when she was just 55 years old.

Now that I have passed that age I fully realise just how young she was to experience such problems.

Mum's health obviously had a huge bearing on my life also, especially as I was only 20 years old when she started to be so ill.

This hub is not designed to wallow in any sort of self pity but rather to try and explain just how hard it is for many people to treat a person the same once they have a disability.

We all seem to forget that a disability could strike any of us at any time. The statistics on disabilities should be a wake up call to us all.

What is it that they say about the road to Hell being paved with good intentions? How very true.

Background information

It was early Autumn 1972. My Mum had been widowed for three years. I still lived at home but was to be married at the Christmas. I had only met my husband that same January and despite warnings that such a short courtship would mean that the marriage would not last, I could not wait to marry him. We are still together almost 38 years later by the way.

Mu m had spent about three months during the summer in hospital. A previously undiagnosed thyroid problem had finally been pinpointed and she had lost a great deal of weight. It is fair to say that she was half the woman she had been.

Mum was still sad from my father's early and unexpected death. Basically she had endured a rotten few years. Her health, however, seemed so much improved that we were all hopeful.

Having only been discharged from hospital a few weeks earlier Mum began to complain of headaches. I will not labour the events but with the doctor refusing to visit Mum's health deteriorated over a few days.

By the Thursday a cerebral hemorrhage was diagnosed and we were told that Mum would not live more than ten days. After sleeping at the hospital with my future husband for two weeks the medical team reassessed Mum's prognosis.

Mum remained very ill but it seemed she would survive. At least for now.

Our new life

When a person suffers such major health problems their life changes completely. Life changes for their loved ones also but not in such a terrible way. The period of adjustment is always hard for all concerned. If money is tight it will usually be more difficult. For example, extra help will not be possible and the carer may have to try and combine paid work with caring. This can mean that the individual needing care is left alone more than is ideal.

Let me try and explain then the title of this hub. Namely-Disability-Concentrating on the person and not the disability.

Losing your speech, senses, identity and talents.

My Mum was left hardly able to speak. She had a few stock words and phrases which were: Yes, No, Don't Know. Why and Bloody bloody. Actually these were very useful. The swear words were much needed when she had to vent some of her frustration out. She would often ask WHY but unfortunately we could not always answer her question. However, these few stock phrases, with the odd drawing and mime often would suffice. Thankfully Mum had retained some of her previously full sense of humour.

My Mum used to love to knit. In fact she knitted many garments for customers and shops. She could no longer do this.

She was never active but loved chatting, TV, reading, crosswords and writing. None of these were possible.As she still had a sense of humour some TV viewing was possible but we had to be careful. She had gone from a person that loved gruesome horror films to someone who was to frightened to watch the Planet of The Apes.

Although Mum had been instantly able to write well with her left hand, having previously been right handed, it was not that simple. As the mood took her she could write long poems, my name and address, nursery rhymes and so much more. However if you asked her to write the word Maintain she could not. Her brain just would not work to order.

If you are a genuine friend the disability should make no difference to your relationship.

After Dad had died Mum had grown close to a few friends. One in particular would pop around the odd evening. Mum would reciprocate. They would have a fish supper, a chat and a giggle. After Mum's stroke this all stopped.

Friends were reluctant to visit Mum during any of her many times in hospital or at home. After all, as one of them so clearly put it, She hated to see her like that.

I was furious. Didn't she realise how much we did and how much Mum hated to be, like that, as she put it. This was Mum now though. She was the same person and needed friends and support more than ever. Imagine going through all of that and losing your contacts also. Perhaps had they been maintained it would have helped her recovery who knows.

All I would like to add to this section is do not be selfish. Think of the person and their fears. If the person can adjust to their new life, mind,and, or body then it should be a doddle for you to.

Disabled people are not necessarily deaf and dumb.

I could never quite understand why everyone seemed to think that Mum was deaf. After I married hubby would help me with Mum sometimes. Pushing the old fashioned wheelchair with Mum in it was hard for me. Hubby however took us to the local fair, into the town and all over the place.

As he pushed he alone long standing neighbours and acquaintances would stop us to see how Mum was. Some would simply ask us and ignore Mum as if she was not there. This is when the Bloody Bloody would come in useful.

Others would talk very slowly to her in an extremely loud voice as if she were deaf.. She would look at us and pull a face, usually behind their backs. I guess she was kinder than they.

I have to say that I am glad that the swear word she had retained was nothing worse. She was still as strong a woman as ever and would have loved to blast them with something stronger.

Never patronize.

This is such an important point. In my Mum's case so many people thought she was now stupid.

Mum had been a bright woman with many interests but because she was now disabled it was assumed that this was no longer the case. Fair enough she had lost much of her power of thought, comprehension and talents but she was never stupid.

Some people would simply avoid her. Those that did not would talk to her as if she was an idiot. I was glad she had retained some humour which she would use occasionally to take the mickey out of such people. Of course the swearing helped yet again.

As I was trying to hold down a full time job Mum was booked in to attend a local day centre a few days a week. Here she would have company, a good lunch and be able to try her hand at a few things. Her previous love of arts and crafts meant that she was soon making crochet blankets, covered coat hangers and knitting squares for a patchwork blanket. None of this was up to her previous talented knitting but she enjoyed it.

Then all of a sudden she would no longer go. She was not happy so it was not fair to make fer.

When I finally got to the bottom of it the problem seemed to lie with the other patients.

Ever sociable Mum would try in her own way to talk to them. She would get up, with her tripod stick to steady and her and try to converse with them. They would look away or move. They did not know how to take her and it upset her badly. She had always loved people, been a jolly soul and liked to be loved but they did not understand.

A disabled person and their nearest and dearest may need help sometimes.

After I had looked after Mum a couple of years I was admitted to hospital. I had a burst appendix. I had an emergency appendectomy and was not discharged for 6 days. I was frantic wondering how Mum was getting on. We lived in a terrace opposite each other. This left her some independence and us some freedom. We were newly weds after all.

Hubby looked after her as well as he could.He also visited me daily in hospital. I was seven miles away in a hospital in Beverley, Yorkshire. This was because I had been an emergency admission.

There were no cell or mobile phones back then. I would ring Mum from the ward on the pay phone to see how she was. I would get a yes, no or don't know to my enquiries with an occasional Bloody thrown in. She was so confused and had no idea where I was really.

With no offers to help transport Mum to see we had little choice. I think that anyway seeing me in hospital may have frightened her. We needed help but we did not receive an. It was Christmas time and everyone was far too busy ensuring that they would have the perfect Christmas.

We did however have some help via social services. This is not so readily available these days though.

Finally.

Mum lived three years after her initial Stroke. She had further bleeding in her brain, thyroid problems, cerebral fits, kidney failure and so much more. In the end it was bronco-pneumonia that killed her during one of her hospital stays. It was July 3rd 1975 when she died and a boiling hot day.

So to round up I guess I would like to convey that a disabled person is just a person with different set of problems and challenges to you.

They are not from another world. Disability is not catching. A disabled person is not always deaf and very rarely stupid. A disabled person still needs people and love. Perhaps they need it more than you can realise.

Try to put yourself into the place of a disabled person. Life can be so hard for such a person without you adding to their problems. You are a grown-up, try acting like one.