I lived most of my live with invisible disability but with the appearance of arthritis and ataxia I now live with visible disability. So which is better?
The issue with invisible disability is exactly as the name suggests: you can’t see it. Many people then don’t accept that you have anything wrong with you because they can’t see it. I always looked young and pale but you couldn’t ever see the immense fatigue I felt day to day, the lack of strength that made standing for any period of time so difficult and that pushing myself would not only tire me out that day but also wipe me out for several days after it.
I would regularly get dirty looks from other people when I took seats on buses and trains and then someone would get on with a visible disability and I wouldn’t leap to my feet to give up my seat.
I once got on the train at Clapham Junction for the short journey to London Victoria and asked for a gentleman to step aside to let me sit down in one of the empty seats in the carriage (there was about 8 of them, an entire section). He let out a massive sigh and eventually stood to one side making a massive deal of it and let me sit down. He then proceeded to ask another girl who was standing if she would also like to sit down in the (near empty carriage). Her response was “no it’s not far”.They then proceeded to talk loudly about lazy people who wanted to sit down for short journeys and how they should just stand. Luckily as my arthritis was flaring up I had a foldup walking stick in my bag so got it out and as the train pulled in to our stop I made a massive effort of standing up with difficulty and started moving forward. The man and the woman did at least have the decency to look sheepish when they saw me walking with a stick, but the question is should I have had to get it out?
I get it, it’s difficult to know if someone has mobility issues due to an illness or disability of whether they are just lazy. The same as whether you don’t know if someone is overweight due to a medical problem or just because they eat far too much and don’t exercise enough. In the UK it’s estimated that 1 in 4 adults are affected by obesity and 1 in 5 children aged 10 to 11. For me obesity with no reason fits in with the topic of smoking which is a post for another day.
So I spent 24/25 years of my live with invisible disability and then the arthritis started leading me to carry a fold up walking stick in my bag for bad moments (although I still had some ‘interesting’ encounters which are again stories for another day).
Nowadays due to the Ataxia I cannot leave the house without a walking stick for short journeys and a scooter or wheelchair for longer journeys and I can definitely conclude this:
YOU ARE TREATED BETTER IF OTHERS CAN SEE YOUR DISABILITY
If you are in a wheelchair or use a stick everyone is generally a lot more understanding as they can see that you have problems with mobility and are also more open to the possibility that your disability affects more than just your legs not working properly.
I’ve only lived with ataxia for a few years so I guess time will tell but the truth is visibility is easier to live with as other people can see when you’re really struggling. The more tired I get, the worse my balance and coordination is making it even more visible than before to other people and day to day life is just easier. People will get out of your way and try to help if they can.
How Rare? 