A positive perspective on disability

Here is my latest piece for Limitless Travel.


We as a society often consider disability to be disadvantageous. Many disabled people themselves hold this viewpoint. Of course there are various challenges and downsides to living with a disability. But having lived with muscular dystrophy all my life, I have come to realise that there are also many positives.

It’s all too easy to succumb to self pity; adopting a pessimistic attitude towards your impairment and complaining about all the things it prevents you from doing.

I won’t deny I fall victim to this school of thought from time to time. I’m only human after all. But at the end of the day, I’m stuck with me. There’s no cure for muscular dystrophy and so there’s really no point in wasting valuable energy complaining about something I cannot control.

To counteract the common perception that to be disabled is to be disadvantaged, I have decided to list some of the ways my life has been enhanced by my condition.

This is not a universal guide and is applicable to my personal experiences as wheelchair user. So, in no particular order…

  • Being able to skip to the front of the queue has brightened my day on many occasions.
  • Concessions: Many leisure facilities and tourist attractions offer some sort of concession for those with a disability.
  • In most cases a carer can accompany you for free. If you don’t have a carer, take a friend instead.
  • Parking: I hold a blue badge which allows me to park in, of course, disabled bays as well as on single and double yellow lines for up to 3 hours. The blue badge scheme is recognised by all European countries.
  • Thanks to the Motability scheme I have a wheelchair accessible vehicle in which I travel as a passenger. Essentially a free car, all I have to fund is the fuel.
  • I can’t drive. Admittedly I wish I could, but the upside is that I have the freedom to drink when I’m out as I’m never the designated driver. Being chauffeured around means I can relax and enjoy the journey rather than stress over traffic and navigation.
  • Shoes never wear out and so last forever. Furthermore, if I don’t feel like wearing shoes, even to go out, I don’t have to since my feet never touch the ground.
  • I always have a comfy seat. I never have to stand around acquiring aching limbs.
  • Kids are fascinated by my wheelchair with all its buttons and mechanisms. They love to sit on my lap or climb on the back and go for a ride. I’m always happy to oblige!
  • Being unable to weight bear, I never have to worry about falling over (a common problem for me as a child). Frosty weather and black ice is no concern.
  • Being faced by an oncoming electric wheelchair causes people to instinctively move out of the way. Move or be mown down!
  • I can run into idiots and get away with it by blaming my wheelchair. Disclaimer: I accept no responsibility if you decide to follow my lead. But by all means do!
  • Similarly, if someone is getting on my nerves I can ‘accidentally’ run over their foot.
  • It’s pretty frustrating finding yourself stranded on the top floor because the only lift has malfunctioned. But there’s always a silver lining: being carried down stairs by a strapping young man is a small price to pay for such an inconvenience.
  • Determination: I believe my perseverance (some would say stubbornness) is a result of living with my disability. I have in many circumstances had to fight harder, work harder and prove myself more than I would have had I been able-bodied.

  • I’ve been introduced to many people from all walks of life (pun intended) who I would never have otherwise. Consequently I feel I have developed a broader perspective on life and a greater awareness of social diversity.
  • My limitations force me to think outside the box. As a wheelchair user there are many struggles; some small and some great. In order to overcome these challenges, I have had to continually think creatively and imaginatively. This may be through adaptive technology, home modifications or inventive DIY solutions.

Do you agree that there are not only disadvantages, but also advantages of living with a disability?

If so, what are some of the benefits and positive aspects of your disability?

 

 

Life as a wheelchair user – societal preconceptions

Being a wheelchair-user with Ullrich congenital muscular dystrophy, means that I have a very visible disability. Consequently, I have encountered societies many preconceptions over the years, based solely on the fact that I have a disability.

Joe public isn’t shy about voicing such assumptions, regardless of how stupid they are, thus demonstrating a vast lack of awareness.

I can’t even reassure you that the following misjudgements are those of children who, through no fault of their own, know no better. In fact I have found that the most narrow-minded and ignorant ideas and interrogatives come from much older individuals.

Here are some examples of the preconceptions I have personally experienced throughout my 28 years.


– Because I am physically disabled I must therefore be mentally disabled too.

– I didn’t or couldn’t have attended mainstream school.

– I need to be spoken to very slowly and very loudly otherwise I simply won’t be able to understand basic verbal communication. Furthermore, some surmise I cannot speak at all.

– Because I have muscular dystrophy, I cannot achieve the same milestones as everyone else, such as learning to drive.

– I cannot work because I am physically disabled.

– Most assume that since I’m now unable to walk, I never could. They’re often shocked to learn I could walk until I reached the age of ten.

– I am completely non-ambulant, yet frustratingly most in society seem to assume that despite the fact I use a powered wheelchair, I must be able to walk at least a little.

This becomes most apparent when attempting to access public transport or when travelling.

I may be faced with a few steps or a short walk to my seat on the plane, or I might be asked to transfer out of my chair.

When I tell them I can’t weight bear at all, I am met with an expression of complete confusion.

‘You can’t walk? Not at all? It’s really not far.’

No, I’m afraid I cannot walk AT ALL.

– As much as I laughed along to the Little Britain sketch of Lou and Andy, I feel it may be at least somewhat responsible for the common assumption that I, along with all other wheelchair users, conveniently jump up and run around maniacally when no one’s watching. Although admittedly I would if I could, sadly this is not the case.

– When you find accessible accommodation isn’t accessible at all: I’m still surprised by the lack of thought that goes into disabled accommodation.

I once found myself unable to even make it through the door of my apparently accessible hotel room because the doors were so narrow. The manager’s response: ‘Oh, can’t you squeeze through?’

– I am rather petite – child sized in fact! However, I like to think I look a little older than twelve. But, at the grand old age of 28, I am still regularly presented with the children’s menu.

– on multiple occasions I’ve been approached by strangers who tell me that I sinned in a former life and my disability is my penance.

– Similarly, I must not believe in God and for this I am being punished.

– I’ve been told I need “fixing”.

– It doesn’t occur to people that I have the same needs and desires as everyone else.

– A misguided generalisation is that disabled people like myself are asexual and do not have romantic relationships.

– Being wheelchair bound, I clearly can’t have and don’t want children.

– Friends are too often mistaken for carers.

– I must know many other similarly disabled people. Of course, makes total sense.

– I’m in a wheelchair therefore I must be taking LOTS of medication and cannot drink alcohol.

– I have a disability therefore I must be contagious.

– I don’t go out or have fun like my peers.

– I must be a loner or even a recluse.

Some of the above are specific to my personal experiences whilst others, I’m aware, are unfortunately familiar to many with a disability.

It’s all too easy to express anger and frustration when presented with such ignorance. Believe me I have had to hold my tongue on many occasions. But, I feel strongly that knowledge is power.  Therefore, the best way to respond to such misguided preconceptions is to educate and raise awareness.


This is my first piece for Limitless Travel. If you liked it, please share!

Thanks

Find me elsewhere

The first article I wrote for Disability Horizons lists my choice of the top ten apps for disabled people.

No matter what your disability, there’s an app out there that can assist you in some way. With the help of such technology, we the disabled community can make our lives that little bit easier.

New apps are being developed everyday. But for the time being, here are my recommendations.

You can also find a few of my articles on the MDUK Trailblazers website. Find out all about my life with Ullrich congenital muscular dystrophy here.

The Channel 4 show The Undateables has proved highly controversial and divisive, particularly within the disabled community. Read my take on the debate here.