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Caledonian University Glasgow 22-2-2012

By Pauline Medd

I had been asked to give a talk on disability at the Caledonian University Glasgow by Ken Andrews of the NHS in Fife. When I arrived I found I was given a talk to1st years mental health students, about forty all together, being 1st years they were initially very quiet so I started on my speech.

There is a Native Americans saying……….. Do not judge a man until you have walked two moons in his moccasins. This passage has meant a lot to me over the years.

I have been disable for 33yrs with MS I am now diabetic I have had various operations, I say the only thing working on me is my mouth some say that is good others wish I would keep quiet. There are many kinds of disabilities, Hearing impairment, visual impairment, mental impairment, but I am here to talk about what I know. Having gone through the various different stages of multiple sclerosis from a walking disable person, to a wheelchair user who needs a hoist to get out and in or of a chair, bed, or toilet. I find the worst part of being disabled is when you are reliant and dependent on other people, this takes independents away, but it also gives you the opportunity to maintain independence.

The lack of proper access to buildings, trains, buses and aeroplanes and the lack of a disabled toilets have huge implications on a disable person, it means not been able to go to the same shops, restaurants, hotels, holidays, and places of worship that your friends and family want to go too, therefore choice is taken away. My church got a grant to put a disable toilet in but had four steps to get in to the church and did nothing about it.

You would have thought that October 2004 would have made a huge difference to disabled people, yes, it made a difference, but not a huge difference, until we get rid of the word “reasonable” which some play on to enable them not to make the changes, we won’t see facilities as they should be, people have had since 1994 to make the changes.

The people who could influence others do not always get it right-

In 2005, I was invited by the BBC to be involved with a disability awareness day.  I did my homework, planned my route, organised for my carers to come in early, and phoned up to check everything was still all right.  Through the conversation, I said I had an electric wheelchair.

I got a phone call from the BBC the day before I was due to go. They questioning the size of my wheelchair, I told them it is 4 x 2, I think that's what set off the alarm bells. That afternoon I got a phone call to say my wheelchair was too big for their lift, not their lift was too small for my wheelchair. it will be better ones we are in our new building some time in 2006 ( keeping in mind their building should have been accessible by October 2004) A wheelchair lift should be an eight-person lift.  Therefore, I was well and truly dumped.

What the BBC should have known is a disable persons rights. They should have known not to have a meeting for disable people in a room that was not accessible for all kinds of disabilities. They should have hired a room or hotel room to have their meeting in with preferably a proper size of disable toilet, PA system and loop system then everybody would have been able to participate and after all receive FREE advice on different disabilities.

I started to go through the DRC to take them to court, but what has to be realised, people with a disability have enough stress in their life they do not need added stress.  I know I would have won my case, but why should I or any other disable person have to put themselves through all that stress, all for the word “reasonable” that’s the government's job to change that not mine.

So through frustration such as these I started to get involved in groups (more power in numbers)

I am one of the founder members of Fife Independent Disability Network that has been running now for 17 yrs.
On Fife’s NHS Disability Group for about 10 yrs.
On Fife Council’s Access Awareness Group.
Lay Assessor with the Care Inspectorate for four yrs.

Which all adds up to what we are doing here today - Patient engagement in service redesign, - do you know if a builder, designer or architect goes ahead and builds something then hand it over, to say NHS if they have got it wrong, then the NHS would have to stand the cost of putting it right. But if they have a disable group check it before it is handed over then the builder has to sort out the problem at their cost.

By involving people from the start, and I mean at the design stage, hopefully by getting the colours right, the hearing system, and the disable facilities then we are going to have a trouble free building and happy people.

I was involved in the design of the wheelchair unit in Lynbank Hospital in Fife and it is just a joy to know that if you are travelling quite a distance to get there you have a changing place toilet which has an over head hoist etc for your use.

I have also been involved recently in the new build of Glenwood dental practise and have just had the final meeting going over our findings, that they need to put up a sign from the car park where the actual entrance is its not obvious, the disable toilet door is a sliding door but nothing says that, and there seams to be a dead area, but I’m told its for prams but nothing says that so signage seams to be a problem. But I have also recommended they should put it forward for a Civic Trust Award.

You see I am not disabled by my disability but by my surroundings and other people’s attitude.

I would welcome any questions………..

There were several different questions these are some.
Q. How have you been treated in hospital in the past?

A. I spoke about the trouble that I had had with some equipment like hoists which hadn't been charged up, hoists which couldn't lift me up above the bed that I needed to go on to, we went through 5 until we got one which would do the job properly, by then I had missed my slot.
I went into the hospital to have a lump removed from my breast, they wanted me in the hospital 1 day before the operation I said sorry know I have more equipment at home, I went in the morning of the operation, I left the next morning at 11 o'clock after the operation, my doctor phoned me up and said where are you, I said at home she said are you all right I said I am fine I have more equipment at home to look after me.

Q. What are some people's attitudes towards you?

A. I spoke about paying an item at a cash desk, I handover the card and then they turn to the carer and ask them a question. Also when a waitress is pouring a cup of tea or coffee, asks the carer does she take sugar?

One lady's partner had just been diagnosed with multiple sclerosis she asked how they should handle it I suggested that she takes one day at a time and live that day to the fullest.

I also mentioned that if I'm on the phone to somebody and I say to them could you give me a bit more time because I am in a wheelchair I’m a disabled person, all of a sudden they start speaking slower as if I can’t understand what they're saying.

So yes I enjoyed myself and would I do it again, in a heartbeat.

 

 

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Disabilities Fife
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Scottish Charity No: SC 026112