I read a letter in our local paper recently, in which someone was complaining about what he called the “misuse” of the disabled Blue Badge parking scheme. He claimed to have seen many people, with Blue Badges, park in our local disabled car parking spaces then “leap out” of their cars and “stride” into town.
Now, I have no doubt whatsoever that there are some people who misuse Blue Badges. Someone might be a carer or relative of a Blue Badge user and use it occasionally to make parking easier (this is a criminal offence – I think some people are not aware of this fact). There will also be some people who are such good actors that they’ve been able to pull the wool over the Blue Badge assessors’ eyes, or whose condition has improved since they obtained their Blue Badge. The former reason is less likely, in my opinion, as I have attempted to get a Blue Badge and believe me the assessors are harsh. I didn’t get one.
However, there will be even more people who have a hidden disability. If you saw me get out of a car and walk away, you would not for one moment think I had mobility problems, particularly on a good day. You can not see the pain I have to ignore to get up and walk. You don’t know that I can only walk a relatively short distance before I need to rest or stop. I don’t use a stick or crutches. I don’t use a wheelchair. In order to lessen my pain, I have to walk fairly quickly, as walking slowly is agonising. Perversely, not walking is worse for my general pain levels, so I will often walk despite my pain because, in the long run, it helps.
Over the years, I have come across a lot of “disable-ist” thinking. One of my former clients, on being told I had a disability, was shocked when I turned up to our first meeting without a wheelchair. For him, disabled meant wheelchair-bound. I often describe myself as disabled and get looked up and down with disbelief. And I know there are thousands of people like me out there, living life with pain, deafness, mental health problems, learning difficulties, head injuries…the list goes on and on.
For me, one of the most disabling aspects of my conditions (which are chronic pain in my back, legs, shoulders and neck plus a mild form of cerebral palsy) is the fatigue. People who are not living life with a chronic illness can not understand the amount of energy it requires to get around each day. At the moment, because my neck and shoulder pain has flared up over the last nine months or so, I am so tired by the energy needed to get up and get dressed that I have to go back to bed for an hour afterwards. This lack of energy has been brilliantly explained by something called The Spoon Theory , which was written by a woman in the USA who is living with chronic illness. I would recommend that everyone reads this theory, as it explains so well the way chronic illness affects your energy levels and how those of us who live with this have to plan, prioritise and pace everything we do. On the excellent Pain Management course I attended some years ago, these were referred to as the three “Ps” , and they rule my life.
For example, tomorrow I have work in the morning (I can only manage three hours a day each weekday or my body lets me know!) then I am meeting a friend for lunch. I will then have the recorder group I run come round to my house in the evening for a vital rehearsal before a performance this weekend. I try not to let my disabilities stop me from enjoying my life, so in come the three “Ps”.
I have made sure that I have nothing to do this afternoon or evening. I will probably go for a walk, but other than that I will do restful things, such as napping, colouring (which really helps me destress), reading and watching TV. I may well go to bed early. Tomorrow, I will probably limit my work to two hours (I work from home, so can be flexible). I will then go out with my friend. This is always good for my mental health, but exhausts me physically, so I will come home and sleep for at least an hour. I will then chill out (as above) until my recorder group arrive, another activity which I love to do, but which exhausts me physically. Once they leave (around 8pm) I will probably go to bed. If you read this last paragraph back, you can hopefully see that I have used the three “Ps” as effectively as possible, leaving room for the other thing which I learned at Pain Management, which is that “some things are worth it”. I will be more tired on Wednesday, but seeing my friend and running my recorder group will be so good for me personally that it will be worth it.
Every day of my life has to be planned this meticulously, every activity I add to my diary carefully weighed against any other activities I have that day/week. Sometimes, I have to cancel things I wanted to do because I have things I have to do, and I can’t do both. Then there are the days when I wake up so tired or in so much pain that no activity is possible, making me an unreliable friend and meaning I may have to cancel some other things later in the week to allow me to fit in essential activities (such as work) that I am not able to do that day.
S0, next time you see someone with a Blue Badge get out of their car and walk normally into town, don’t assume they are swinging the lead. They may well be living with an invisible chronic illness which means they really need that badge. In this time of increasing polarisation and a “them and us” mentality, please think before you judge.