We have come a long way. So much that was viewed as taboo in the past is now part of modern discourse. The once shrouded mysteries of sex are discussed in the classroom; cancer is no longer spoken of in hushed voices. Issues around race, gender and sexual orientation, though far from ideal, are at least getting the consideration they deserve. Yet, I would argue there is one taboo that still endures that affects the lives of millions of people: disability.
I can already hear cries of ‘No, not at all!’ so let me explain. Taboo is a subject that people avoid because it is extremely offensive or embarrassing (Longman Dictionary). When something is taboo, the person who falls under the prohibited characteristic feels shame. Disability is often not very pretty. Many suffer from bladder and bowel issues that thrust them even further from the socially acceptable. Some children are born with such severe birth defects that when we see them, we wish to look away. Others are victims of terrible accidents that leave them physically impaired. Feeling uncomfortable?
The constraints of shame
This post arose from a conversation I had with the members of my MS group. The group contains those who are barely affected by the disease and those who are permanently wheelchair bound. We were talking about the use of mobility aids and the resistance we feel for them.
One member relayed the funny/tragic story of her father who, blind and suffering with dementia, finally allowed his wife to take him out the only way she could: on a mobility scooter. Once they reached the town centre, he threw his coat over his head. ‘What are you doing?’ she asked. ‘I don’t want anyone to see me in a scooter,’ was the reply, to which we all laughed heartily. Despite everything that was wrong with him, he was mortified to be seen to be disabled. Like so many, his absorption of the stigma of disability added a further layer to his suffering.
Vanity! Vanity! All is vanity!
I know any number of stories that are effectively the same and often they make me cross. One person’s ‘vanity’ at being seen with a stick or scooter often leads to the inconvenience of others. It may result in falls and hospitalisation; it may engender an excursion that is painful in its slowness for those accompanying .
When talking to my friends (all of whom were resisting to the last!) I suggested that it was perhaps their egos that were standing in the way of their safety and independence. They nodded in agreement. Further, I argued, that if we ourselves are ‘ashamed’ of our disability, how can we expect others to be accepting? We can only normalise this if we ourselves make it normal. The number of people I see with canes, walkers and scooters is legion. And every time I see someone making the best of their situation, I internally applaud them.
I also fully understand those reluctant to reveal their disability so openly. One hardly looks sexy in a scooter. Or a wheelchair. Or with a cane.
But we are how we are. Accepting that is probably the biggest obstacle of all.
Are you disabled enough?
My husband is always threatening to buy me a T-shirt that says, ‘I’m only in it for the parking.’
Ask anyone who has used a disabled parking bay and they can regale you with stories of when they have been given dirty looks or worse. Personally, I never use one if I can avoid it or feel fit enough to get to where I need to go, but sometimes, you don’t have a choice. For those with invisible illnesses, it is often excruciating. After all, you look okay and may not even be in a wheelchair or using a cane. But short of having a letter explaining why you need it: you suffer leg pain, chronic fatigue or in my case, legs that work, until they don’t, you just have to accept the withering looks of those who think you are somehow taking advantage of free parking.
The truth is that Blue Badges are given out only very reluctantly and with copious documentation. They are not given out on request. Anyone that has one, needs it.
And the greatest irony of all is that I would love to leave my car behind and walk, as I used to.
Be grateful
Listen to any conversation between a disabled person and a non-disabled and you will probably notice that the disabled person is exceptionally polite. They will say thank you for every single step that is taken to remove the impediments that stand in their way or for any miniscule amount of help given. I am all for politeness, but where we are only easing the passage of someone for whom the world has not catered, I not sure that we should let the world off so lightly. Should someone set a great wall in front of your path and then offer to help you scale it, would you be appreciative or annoyed that they set it there in the first place?
The vulnerability that disability immediately brings means that we have to appease our helpers. This is not a comfortable position and is not one we should find ourselves in. I have been aided by any number of delightful and kindly strangers – when stuck on the Barcelona metro for example, where the disabled entrance did not lead to a disabled exit (!?!) – a sweet father took my wheelchair up the stairs and then went back for his own child’s pushchair, while my husband helped me up the steps. He was a darling, but the system was at fault.
Not making the world accessible is a discrimination as profound as that against a racial group. Disabled lives are important, but I doubt there will be any marches for this cause or wheelchair rallies, for that matter.
Changing the script
If you are reading this blog, I think it fair to assume that you are sympathetic to the cause. As our natural allies, I urge you to treat those with disabilities as normally as anyone else. It’s easy to fall into saviour syndrome and make any assistance more about you than the recipient. We’ve all had those whose relish in helping us makes us feel diminished.
Just as we have learned to treat those who are different from us in ethnicity or sexual orientation, I ask that we do the same for the disabled community. (I am fully aware that mental disability is as crippling as the physical, but my post doesn’t have room for that discussion here.) For me, the mark of true civilisation is in how we treat our most vulnerable and marginalised members. We have come so far in this. Just one more push and we can explode the last taboo.
