Hi folks, hope you’re all healthy and happy!
Here is my latest piece for Muscular Dystrophy Trailblazers. I really hope you like it!
I’m presently in the process of recruiting new carers. Many applicants have expressed their disbelief at how much I do for myself. One even congratulated me; “well done you!”, to which my current carer responded with a subtle mocking applause.
Why are people so surprised at my level of ability? Do they see me in a wheelchair and assume that all wheelchair users are similarly afflicted and completely dependent on others? Is the concept of disability really that black and white to the general public?
This made me think about how disabled people are perceived by society. Not for what we are able to do, but rather for all the things they assume we cannot.
Each of us is an individual and we therefore experience different limitations and variable degrees of severity.
I have Ullrich congenital muscular dystrophy and as a consequence there are certain things I am physically unable to do. However, not everyone with the same condition will be affected in exactly the same way. A persons disability is arguably as unique as their personality.
Raising awareness of the fact that there is also ability within disability is, I feel, essential in addressing the societal misjudgement that ‘disability’ equals ‘cannot’. Disability is diverse. Yes it restricts us. But disability is not just about what we can’t do, it’s also about what we CAN do.
We can and we do…
1. Have sex – Yes, believe it or not sex is not exclusive to the young and beautiful. Guess what, old people do it too – shock horror!
2. Have romantic relationships, get married and have children.
3. Leave the house! Sometimes unaccompanied – While independently wheeling around town, I often encounter puzzled onlookers questioning, “where is your helper?”. Sometimes I tell them I’m trying to escape or that my “helper” fell in the river. Sometimes!
4. Drink alcohol – Having managed to leave the house and evade the confused locals (well done me!) I may join some friends for a drink. Yes, an alcoholic drink. Now of course not all disabled people can or do drink. Then again, not all able-bodied people drink, do they. So the next time you see someone with a disability enjoying a pint, don’t be so surprised.
5. Travel – Although many of us require support from friends, family or a carer in order to get out and about; travel, both nationally and internationally is becoming increasingly accessible to all.
6. Drive a car – You’d be amazed how vehicles can be adapted to accommodate disabled drivers. We too want to get out and explore the open road. And for those of us who are unable to drive, travelling as a passenger is another option.
7. Attend university, get a job and have a career – It still baffles me why people are so astounded by the idea of disabled people who are both intelligent and able to work. Two words: Stephen Hawking!
8. Have our own homes – It would appear the general consensus amongst society is that this is something disabled people cannot ever achieve. Of course, many of us do reside with family members, myself included. But there are also those who can and do, rent or buy their own property. Some are able to live independently, while others require assistance from carers.
This is just a brief overview of the ways in which society misjudges the potential and capabilities of those of us with disabilities.
I’d love to hear more examples from you!
Please get in touch and leave a comment to share your experiences.