Sharon Kilty's Arthritis News Column 2003

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access to buildings

I have recently been struck by how difficult it can be to get into some buildings when you have a disability. Doors are often stiff and require quite a lot of strength to push or pull them open, something I don't have. I usually resort to using my shoulder to push on a door, or both hands if I need to pull it open ( I hope my Rheumatologist doesn't read this). Whilst I can manage doors this way, electric doors would be so much easier - have you ever noticed that where there are electric doors most people choose to use them out of convenience anyway.

I am also constantly amazed at how many buildings there are that still have steps up to the front. Whilst there is often an alternative entrance available, it is rightly aimed at wheelchair users and is consequently far too far for me to walk. Whilst I am very grateful that I can walk, it does leave me unable to access some buildings easily at all.

I recently borrowed a wheel chair for the day, as I was going to be doing a lot of walking around on one site and I realised it would be too much for me. Whilst everything was on the flat and appeared disabled- friendly I very quickly ran into trouble. All the doors were manual swing doors, which needed to be pulled or pushed open. This meant I could not use them from my wheelchair and I ended up either having to get out each time or hope some kind person would open it for me. Hardly support for independence!

When I recently asked at a cinema how they intended to upgrade their building to meet the access requirements for the disability discrimination act they told me that they were not planning to make any changes as it would cost too much. When I asked further, I was told that it would probably take a test case to make businesses take the act seriously, his point being that if they could get away without upgrading they would.

I found this attitude disappointing but I can also see, sadly, that he is probably right. As a race, humans are very good at sticking their head in the sand and ignoring the obvious until it affects them personally. So as usual, it looks like the onus is on the individual to make a point when services do not meet their expectations. So, like it or not, it would seem that having a disability comes with the added role of campaigning for change, and informing others of what our access needs are. I should have guessed that the quiet life is not an option!

make life simpler

Having recently berated the rest of the world for not providing me with access suitable for my disability I really felt that I should turn the spotlight on myself and ask the question, "Have I created a home that is fully accessible to my needs?" When I looked around the house it very quickly became clear that I had not.

Of course there are the big things like the stairs being too steep and the house being quite spread out, as well as the lack of storage space, which means I seem to need to constantly clear up! These problems are not the easiest or cheapest ones to solve, however there were much smaller changes that I could make in order to make life simpler. My kitchen has always been a nightmare but little changes have made a big difference. We used to keep the fridge in the larder which meant walking backwards and forwards, so I have moved it into the kitchen next to the work surface where we make tea and coffee. This means I don't have to move at all. I was also lucky enough to replace my old fridge with a fridge freezer which means I no longer have to keep bending down just to see what is in there. This simple rearrangement has enhanced my life beyond belief. I have now been bitten by the bug. The mornings are always difficult for me as I am often very stiff. My daughter takes a packed lunch to school and every morning I dreaded getting everything together to make her lunch. So I looked at all the things I needed like squash, sandwich bags, fruit and yoghurts etc and rehomed them all so that I could reach them from my stool or within a two step radius. I am certainly a much happier bunny in the mornings.

I have been amazed at how much of a difference little changes can make, and I continue to look at how I can make life simpler for myself. This year however we are planning to have quite a lot of building work done on the house so I have already started to plan my new kitchen and my new bathroom. When starting from scratch I want to be sure that we build into the environment things that are going to make my life easier, such as well placed cupboards that are not too high, taps with easily turned handles and work surfaces at the right height for me. The Occupational Therapist are great at offering advice on how to make tasks easier and they often have a good range of gadgets. I have also received a lot of advice from our local Disability Living Centre who are only too keen to help out and seem to enjoy the challenge of solving problems. I will keep you posted on how the building work goes and what solutions I come up with for an easier life.

children come first

Recently I was lucky enough to meet a woman who, like me, has had her arthritis for some years. Like me, she also has a young daughter. Mary and I very quickly fell into discussions on how difficult it can be at times to juggle family life and taking care of ourselves. It was so wonderful to meet someone else, who like me, has to decide on a daily basis where to invest their energy.

Life is hard enough when you are a new mum and I remember well feeling inadequate at times. New mothers whom I met in those early days were quick to inform me that they often felt inadequate too, but the tiredness of my arthritis often meant that I would sleep whenever my baby daughter did. This was lovely for us but meant that unlike the other young mums who used this time for house work mine went out of the window. Now my daughter is older I can see that an untidy house did not do her any harm and all that time we spent together means we have a special relationship.

Today, knowing only too well that my energy is limited, fitting in household responsibilities like shopping, washing, and cleaning has to be weighed up carefully with commitments to my daughter such as watching her in football matches and school plays, driving her and friends to out of school activities and just spending time with her when we are not exhausted! As a mother, both Mary and I agreed that there was no contest - the children come first. This is not always easy though when the house work and shopping get on top of you and your social conscience begins to make you feel ashamed of the state of your house, garden, car and self. If this rings bells for you take heart you are not alone.

The sister on our Rheumatology Unit gave me a wonderful story. Her aunt, she told me, was a wonderful woman, who had never believed in house work. She was too busy. One day her husband decided to rib her about the dust in the house so he wrote "I love you" in the dust on the surface of their lovely oak sideboard. In response to this gentle rib, she wrote in the dust below her husband's message "I love you too". I admire the sentiments in this story greatly. After all, it's only dust and there will always be plenty to go around. Ourselves and our families, however, are precious. Time invested in ourselves and each other is priceless and makes for a good life filled with beautiful memories to look back on.

the right scooter

Those of you who have read my column before will remember that it was not that long ago that I felt anxious about using shopping scooters in case it involved lots of complicated explanations about my disability. I now regularly use scooters at big supermarkets and have used shop mobility whilst visiting my mother. Unfortunately we are not blessed with Shopmobility in Cornwall and getting around is quite difficult. Having realised how much I was missing out on by not having a scooter I finally decided this month to buy one.

I was initially daunted by the prospect of trying to decide which sort of scooter to get. Some are small about town type scooters and others are clearly designed with being able to travel off road. After carefully working out what my main requirements were, I discovered a local company who rented out scooters. This proved to be a gold mine. I went to see them and explained my problem. Lee, the owner, suggested that to start with, it might be better to hire one for a week and try out all the different activities I would normally want to be able to do. Well, my daughter and I had a great time. I quickly realised that, although I initially thought I would need a large scooter that could cope with rough terrain, what I actually needed most was a small, about town design, that I could take apart and put in the back of my car.

Having discovered the right scooter for me, I have purchased it. I am truly grateful for having had the chance to try it out for a week first, as I would have ended up with completely the wrong model for me had I not had this opportunity. I have rediscovered a whole part of my life that had become impossible and having my scooter has improved my independence 100%. My daughter is delighted too and feels we are able to do "normal" things like shopping at our leisure and taking time to choose clothes together. There is only one down side to my new found freedom, my daughter now drags me around all the clothes shops and is busy spending my money for me. Still, it is lovely to be able to shop till we drop and still have energy for pizza and a coffee.

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