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Mobility – Denise

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Profile

Age: 32    Height: 5ft 3ins

Lives in: London

Condition:
Relapsing/remitting multiple sclerosis

Assistive aids:
Trackpad, Kowsky crutches

Links: Case studies | Related statistics

What I can do

  • See well enough to read large print
  • Occasionally balance without holding on to something
  • Manage 12 steps on my own using a hand rail and resting
  • Bend down to pick up something from the floor and then straighten up holding on to something for balance
  • Reach both arms just above the head but not fully extend them
  • Reach one arm above head but not fully extend it
  • Use a trackpad in lieu of a conventional mouse to operate computer
  • Use a keyboard, although finger dexterity makes this difficult and fatiguing

What I cannot do

  • Have difficulty reading ordinary newspaper print
  • Have difficulty reaching either arm out in front due to restrictions of mobility aid
  • Cannot easily turn book pages with either the left or right hand
  • Have difficulty with tasks that require carrying objects, standing for long periods or navigating crowds
  • Cannot run or jump
  • Cannot easily pick up and hold a mug of coffee with either the left or right hand
  • Usually need to hold on to keep balance or use mobility aid
  • Often have difficulty walking 50 yards without help and without stopping even using a mobility aid
  • Cannot manage 12 steps on my own unless using a mobility aid or holding external support
  • Cannot kneel down to sweep something up with a dustpan and brush and then straighten up again even if something is available to hold onto
  • Cannot stand at social events, which limits socialisation opportunities

Occupation

I was a forensic toxicologist until a change in my health. In 2008, I co-founded Enabled by Design – an online community of people passionate about well designed everyday products. By sharing their loves, hates and ideas, Enabled by Design-ers challenge the one-size-fits-all approach to assistive equipment through the use of clever modern design.

My condition

Multiple sclerosis and optic neuritis. My ability is very variable depending on fatigue and whether experiencing a relapse. I was diagnosed with relapsing-remitting multiple sclerosis in 2003 at the age of 24. Multiple sclerosis is a neurological condition where the immune system confuses the central nervous system for a foreign body and attacks it. This leads to damage of the protective sheath surrounding the nerves and can lead to a wide range of symptoms. My symptoms include/have included severe fatigue, poor mobility, poor dexterity, poor coordination, numbness and tingling, optic neuritis leading to blurred and double vision, dizziness and vertigo, impaired hearing, difficulty swallowing, pain and spasms. These symptoms can vary from day to day and settle down or flare up with little or no warning, making life extremely unpredictable.

A typical day

I normally wake and get up at 10am. My fatigue levels are highest in the morning and lasts through the day and it often takes me a long time to make a start on anything. If I’m not going out of the house I tend to shower later in the day, when my fatigue levels are slightly lower.

I had to give up my career due to the change in my health. Since then I’ve repeatedly tried to find alternative work, but standard 9-5 jobs are unmanageable and inaccessible to me. Ideally I need to be able to work from home, but I’ve yet to find an employer that would offer this from day one. Therefore, spurred on by my experiences following my diagnosis of MS, I decided to set up Enabled by Design.

My day has very little structure and is largely dependent on my fatigue levels.

Good designs and how they improve my life

Good design can be the difference between being able to use a product/service or being excluded from using it all together.

Good design can help me to live independently and carry out my day-to-day activities with the minimum of difficulty or support.

Good design meets my needs without me feeling self-conscious, excluded or stigmatised.

Examples:

Kowsky crutches – These crutches are gloss black and in my opinion look smart, stylish and complement my dress sense. They are comfortable to use with a rubberised grip and most importantly for me don’t make the annoying clicking noise that my NHS crutches made.

OXO Y-peeler – This is a mainstream product that can be found in a wide range of shops and department stores. It has a comfortable, wide, non-slip grip that really helps with my poor dexterity.

One-touch can opener – I love using this gadget! It takes the hassle out of opening tins, as it gets rid of the need to use an old school tin opener that is awkward and often painful to use. I can now open a tin of beans at a push of a button! People always love a gadget that helps to make life easier and this does exactly that.

Lessons for designers

  • Communication and observation are priceless tools
  • Functionality is paramount but aesthetics are very important too
  • Style without functionality is potentially a wasted opportunity. If it doesn’t work there’s no point in having it.
  • One-size-fits-all doesn’t always work, different people can have very differing needs and desires
  • Be aware of your audience and make a point of talking to them early on in the design process.

Poor designs and how they impact my life

Poor design can lead to frustration, stress, exclusion and embarrassment, as well as having the potential for being dangerous, stigmatising or useless.

My old NHS crutches looked ugly and constantly clicked, causing me to feel self-conscious as people turned to find out what was making the noise. I also had people constantly asking me how I’d injured myself, making me feel awkward. The crutch handles/grips were hard and  not cushioned, leading to discomfort in my wrists and calluses on my hands.

Five most important ‘things’ in my life

  • family
  • friends
  • health
  • independence
  • design

Message for designers

My bugbear is that a lot of products that can help to support independent living are ugly and clinical looking. I don’t necessarily want to use a ‘special’ product and would much prefer to see designers focusing on the principles of inclusive/universal design and ergonomics to make mainstream, desirable products/services that can help to make everyone’s lives that bit easier.