Beth’s Wheelchair Challenge

By Victoria Barr

I was diagnosed with limb girdle muscular dystrophy (LGMD) at the age of 18 and over the last six years I have noticed the deterioration in the strength and stability of my mobility. Life with muscular dystrophy has felt less isolated since attending the LGMD Specific day and knowing that there is a great support group out there has really helped me to live a more positive and challenging life. The reality is I may be a wheelchair user within the next 10 years because I am constantly adapting to the changes in my condition and the situations I face.

Facing the reality of what may be ahead, I asked a friend, who is fully able, to take up the challenge of sitting in a wheelchair for eight hours to see what it may be like to ‘live the life of a wheelchair user’.

Beth On Wheels
Beth Davies, a student at Aston University, Birmingham accepted the challenge that took place on the 22 July 2006. Myself and a friend, Katrina Brown, both accompanied Beth throughout the day.

The start of the challenge
We collected the wheelchair from the Shopmobility Centre in the Bullring, Birmingham. The tasks we carried out throughout the day were:

• Returned items of clothing to retail shops
• Went around the Bullring Shopping Centre
• Shopping around a local supermarket
• Assess the accessibility in a local cinema
• Went on a bus journey
• Out for lunch and to a couple of bars

Beth’s take on the day - Victoria asks the questions
How did it feel sitting in the wheelchair?

Beth: "The wheelchair had a soft padded cushion on it so it felt fairly comfortable. I started to wheel myself and it felt quite smooth around the Bullring shopping centre, I guess this is because it is a new building but other places didn’t feel so accessible. To sit in a wheelchair for more 8 hours may have been harder."

How did you find your experience?
Beth: "Overall the day was fun, interesting and a real eye opener. I think it's a really important lesson learned to realise how much I take for granted and how well people with a disability cope with the general challenges faced each day, in order to be independent."

What things did you notice the most?
Beth: "Instantly I noticed the height difference from standing to a sitting position. I sometimes struggled to hear what people said and felt like I was craning my neck to hear!! I also noticed that I could no longer get around in a hurry, as my maximum speed wasn't very fast, and I relied on others to help with doors, getting up and down curbs and in and out of lifts etc. Also going up hills/slopes took such an effort and I was worried I would roll back if I didn’t keep the momentum up. Down slopes the wheelchair seemed to pick up speed so stopping myself from rolling down too fast was interesting; I got my friend to steady me. An added point to this was the unevenness of the pavements and door entrances meant that sometimes the wheelchair buckled and I was thrown forward."

How did you cope with going out for lunch?
Beth: "Lunch time was ok; we went to a pub and sat outside until it rained. Wheeling myself through the tables and chairs was manageable although some had to be moved out the way and manoeuvring into a space took some skill."

What was it like on public transport?
Beth: "Public transport wasn't too bad as I had help, but if I was alone I would have found it really hard manoeuvring into the really tight corner which is the allocated wheelchair space. Some people didn’t even bother to move out the way so I could wheel past. The first bus driver couldn’t have been more helpful, he pulled out the ramp to let me on and getting off, the ramp lever was too stiff to open so helped me over the gap between the bus and pavement. The return journey into town was far different. It rained for about 4hours in the afternoon so we got really wet. The bus driver was not helpful. He didn't even attempt to get the ramp out, and I wonder what I would have done if I was on my own because there would be no other way to get up on to the bus unless the general public helped me."

What did you find most challenging?
Beth: "The hardest thing was the fact that I was relying on others for a vast majority of the day. I would really have struggled to open doors all by myself as some are really heavy!! Also getting in and out of lifts was interesting, some of the doors were so narrow that there wasn't enough room to have my arms either side to wheel myself in! A general loss of independence was really significant, because I am used to just nipping into town on my own, in the spur of the moment, grabbing a few things and then rushing home. This also played a significant part when it rained because we all got really wet, it was harder to wheel myself as the wheels were wet and slippy and general moving around took even longer."

How did people approach you, as a wheelchair user?
Beth: "In general I felt that I was treated no differently, and people seemed open and helpful. Some people did stare though, which made me feel slightly uncomfortable, (but sometimes I felt that people deliberately didn't look at me because maybe they felt uncomfortable!), I think this was probably due to curiosity more than anything else, but the fact that some people did it with a miserable face as opposed to a smile was what made it feel strange!"

Any final comments?
Beth: "If I lived as a permanent wheelchair user added things that I would find difficult would be cooking for myself and the accessibility in the home. I think that a lot of planning is involved in order to keep as much independence as possible, especially when considering transport and weather factors.

A thought which we all discussed during the day was the upper strength and skills that sports people have, its amazing!!

Although I don’t have a lot of knowledge about muscular dystrophy, Victoria has one of the conditions and I understand that it affects the strength of your muscles. Spending a day in a wheelchair made me really realise how much I take for granted and appreciate the struggles that any person with a disability may have to face."

Victoria would like to thank:

• Beth and Katrina for the time they gave up to do this challenge.
• To Shopmobility for lending us the wheelchair for the day.
• Heart FM (Birmingham) for mentioning us on the radio and everyone who has help support the event.