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Mobility – Peter

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Profile

Age: 63    Height: 5ft 6ins

Lives in: Leicestershire

Condition:
Severe muscular dystrophy

Assistive aids:
Motorised wheelchair, manual wheelchair, adapted car with drive-by-wire steering, walking frame, power-assisted armchair, power-assisted bed, spectacles

Links: Case studies | Related statistics

What I can do

  • Can use a computer to browse the internet and send emails
  • Can turn the pages of a book
  • Can pick up and carry a mug of coffee with left hand only
  • Can carry a pint of milk with left hand
  • Can use a fork with left hand

What I cannot do

  • Always needs to hold on to keep balance
  • Cannot manage one step on my own
  • Cannot bend down to pick something up and then straighten up again even if something is available to hold onto
  • Cannot walk 50 yards without help and without stopping, even using a walking aid
  • Cannot reach either arm above head
  • Cannot reach both arms above head
  • Cannot pick up and carry a 5lb bag of potatoes with either hand
  • Cannot use a mobile phone to send a text message

Occupation

I was a primary teacher for 31 years in the first open plan school in Leicestershire. I worked with an integrated system of subjects in a progressive school and I loved it, particularly the creative subjects. I taught all subjects and worked weekends with ceramics and environmental studies. I was very happy in my work.

My condition

I have Congenital Fibre Type Dysproportion – a type of Muscular Dystrophy. It affects muscles in my arms, legs and shoulders. Luckily, it is slow moving and in my life I have been able to walk across England and Wales, ski in Italy and cycle in England and France for extended holidays. I was also able to teach until 2001 and act with a medieval drama group until the late 1990s. I now use a wheelchair around the house, only standing to cook or transfer to another chair. I drive from my wheelchair in an adapted car and I still travel alone. I visit New York and over the last couple of years I have been to Copenhagen, Avignon, New Delhi and Cyprus. I obviously need assistance and I organise it accordingly. In Delhi, I hired a driver and pusher and travelled to Agra and Jaipur. I managed myself to Avignon with a manual wheelchair, bag and two walking sticks plus a poor ability in French.

As I get older I become weaker and have to adapt to different ways of washing, cooking and getting about. Every day is slightly different.

A typical day

It takes me nearly an hour to bathe, dress and shave. Today I went to a hospice where I led a group working with naked angel cutouts for Valentine’s Day. I like craft work. The computer features usually within an hour or two of the day, catching up with friends and I don’t mean Facebook. I email friends individually. I have had some of my friends for over 50 years. I will clear away dry washing and then reload the washer to clear it before the cleaners come the next day. I cook my own food in the evening and usually settle to watch a movie or TV. I live alone in a village in a converted cowshed and hay barn. A drive to town often features and I do my own shopping and meet up with friends for coffee. If the weather is nice, I take a ‘walk’ with the wheelchair. I usually do some sort of hand work – yesterday I attempted etching for some hospice print work. I am also making a bag out of ribbons and an old magazine and will give it to the hospice.

Good designs and how they improve my life

I agree with Massimo Vignelli’s description: ‘To do well, to do bad, costs the same. It’s not that good design costs more than bad design. Bad design is expensive and on top of that it’s a waste. Good design is a good investment and it projects a good image on the company too.’

I get angry when something doesn’t work. A well-designed piece should fit the purpose and look good too. The simpler the better – if it works.

Furniture: I often refer to my armchair, which raises me up and down and reclines. It works perfectly on that level but it is ugly to look at – a pink Draylon monster. My bed has foot and back raising possibilities but why do they make it look like a Victorian sleigh bed?  It is either that or an institutionalised tubular bed. I love machines that work and look good in any environment, not just a hospital ward.

Remote Controls: I have remote controls for my garage door, car door, ramp and curtains. They are there but don’t cry out ‘Look at me. I’m a design!’  The design becomes integrated within the normality of every day living and actually enhances my life.

Wheelchairs: My Jazzy wheelchair is red, which I like. Its design enables me to go where I would like to go either on a bus or the train. It turns on itself. Most of the time I forget just how manoeuvrable it is, until someone comments on the tight space that I have just reversed into on a train or in a cafe. It looks good and works.

Lessons for designers

You have so much good stuff out there. How do we find it? I am searching for a change of kitchen and bathroom but can’t yet find exactly what I am looking for. It must be out there but the weight of information is huge. Regular bath and kitchen sites have limited kitchens that are especially designed or they are too expensive. Change to an object needs to be incorporated at the beginning of the design to make it cheap and inclusive. My previous car cost £11,000. My present car cost £31,000. It is the same make and model but the adaptations represent a cost of £20,000. The inside floor had to be removed and rebuilt to accommodate me in the wheelchair. If the car had been designed that way from the beginning it would have presented a huge saving.

Consult those for whom you are designing. The object you are designing may not fit the purpose for which it has been designed. Today I went into a new disabled toilet. The old one had a lid on the seat. I used the lid to assist me out of the wheelchair so that I could reach the assist bars. Now I have to lean on the actual toilet seat and then grip the support bars with the risk of spreading infection. I showed the nurse who organised the new loo and now she proposes to use a regular spray on the bars. She did consult a disabled person but she chose one who does not stand to transfer. Everyone is different but the more you consult the better chance you have of selling a successful product.

Poor designs and how they impact my life

Poorly designed environments cause frustrations. They exclude me. I can’t get in. Steps are put in new builds and conversions and restrict my free flow through pubs and restaurants. Automatic doors are put into banks with a disability button at the top of three steps where the wheelchair can’t go. Mezzanine lifts are put into banks, which can’t be used independently because the main door interferes with the lift opening.

My life is lived with batteries and I grow to hate them. They never do what they are supposed to do. My wheelchair battery should have the range of 25 miles. I am lucky to get five even on a daily recharge. I have to recharge my razor, toothbrush, bath lift, two telephones, wheelchair, camera, landline and they all have different connection wires. The operation of each thing has to be learnt. One would assume that green means go and red stop, but mobile phones often have red to switch the phone on and then green to continue and then red to stop. A product should be idiot proof. There are a lot of people like me out there. We crave a simple product that works easily and looks good without paying too much for the privilege.

We want to be included with the help of design, not excluded by thoughtlessness.

Five most important ‘things’ in my life

  • Family
  • Friends
  • My independence – without that I couldn’t live alone and manage daily living
  • A good life – food, wine, the arts, music, good friends and sharing that with others
  • Travel – seeing new places, new people and having new experiences

Message for designers

Quite simply talk to others and share ideas. Go outside the usual circle of colleagues, friends and acquaintances. Ask about the experiences of others with your ideas. Examine new routes. Play, experiment, test your hypotheses, go back to the drawing board and re-examine. Share your ideas again and all this even before anything is made. I am sure that a lot of this does happen – I feel that successful products come from just such a process.