Tag: Limitless Travel

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.

• 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 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. 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.
• 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 makes people instinctively move out of the way. Move or be mown down!
• I can “accidentally” 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 downstairs 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 if I were able-bodied.

• I’ve been introduced to many people through my disability.
• My limitations force me to think outside the box. As a wheelchair-user, there are many struggles. In order to overcome these challenges, I have to think creatively. This may be through adaptive technology, home modifications or inventive DIY solutions.

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

Joe public isn’t shy about voicing such assumptions, regardless of how stupid they may be, thus demonstrating a lack of awareness and education.

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 older people.

Here are some examples of the preconceptions I have personally experienced throughout my 29 years.

---

1. Because I am physically disabled I must therefore have learning disabilities too.

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

3. 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 people surmise I cannot speak at all!

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

5. I cannot work, or contribute to society, because I am physically disabled.

6. Most assume that since I’m now unable to walk, I never could. They are often shocked to learn I could walk up to the age of ten.

7. I am completely non-ambulant (unable to weight-bear). However, many seem to assume that despite the fact I use a powered wheelchair, I must be able to walk.

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!

8. 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.

9. When you find accessible accommodation isn’t accessible at all:

Upon arrival, I once found myself unable to enter my supposedly accessible hotel room because the door was so narrow. The manager’s response: ‘Oh, can’t you just squeeze through?’

10. I am rather petite – child sized in fact. (Just what you want when you’re a 29 year-old woman!) However, I like to think I look a little older than twelve. But I am still, on occasion, presented with the children’s menu!

11. 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.

12. Similarly, I have been asked if I believe in God. Replying that I do not, I was told that I am therefore being punished by God – my disability is an affliction! Erm, nope. In my case, it’s genetic.

13. I’ve been told I need “fixing”.

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

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

16. Being a wheelchair-user, I clearly can’t have and don’t want children.

17. Friends are too often mistaken for my carers.

18. I must know many other similarly disabled people. Of course, makes total sense. We are know each other!

19. I use a wheelchair, therefore I must be taking LOTS of medication and cannot drink alcohol.

20. I have a disability therefore I must be contagious.

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

22. I must be a loner or even a recluse. (Perhaps suggesting there are still many out there who feel disabled people, like me, shouldn’t be seen in public or play an active role in the community).

---

*This list is representative of my personal experiences. However, I’m sure there are many of you who will be able relate to some degree.*

It is understandable and all too easy to express anger and frustration when presented with such ignorance. But, I do feel strongly that knowledge is power. Therefore, the best way to respond to such misguided preconceptions is to educate, infor and raise awareness.