I am on the train on my way to London. It’s a 3 hour journey including my car ride to the station and its my commute to work. It’s very cold outside, on the way to the station the snow drifts were over 2 metres high in places and although the snow ploughs have been out the roads are still treacherous.
As I sit here on the train I’m wondering what it is that makes some people treacherous while others are the nicest you might ever hope to meet. Do treacherous people set out to be treacherous or are they just misguided, self-centred or emotionally unintelligent? I expect I’ll never know. Fortunately I have more of the nicest kind of people in my life than I do the treacherous kind. I tend to avoid the latter as much as I can.
As a breast cancer patient (I’m still receiving treatment and not officially in remission yet) I’ve come to appreciate what living with disability means. I’ve also come to realise how much discrimination goes on. Sadly there appears to be a link between those of a treacherous disposition and flagrant discrimination involving those who are different in some way, whether that’s a disability, ethnicity or gender. My earliest experiences of discrimination came as a child because I had ginger hair (I have very little hair now and will come on to that later). I was teased relentlessly by certain girls at school and, to be honest, they simply weren’t nice girls. They didn’t grow up into nice adults either.
Now as a breast cancer patient I realise that discrimination against people with disabilities is a huge issue in spite of laws to the contrary and public awareness campaigns by any number of charities. The UK held the Olympics and Paralympics last summer but at the grass-roots level I see little evidence that attitudes towards those with disabilities have really changed. There remains a significant amount of discrimination.
Before breast cancer I never considered myself as disabled. During the surgery and chemotherapy I wanted to believe that although my body had changed beyond all recognition I was still the same person capable of the same things. I am the same person. I am not capable of the same things. I know I will regain some of what has been lost – stamina, muscle tone, hair, strength. I know that some things might be lost forever – being pain-free, sleeping soundly, perfect hearing, the level of stamina I had before embarking on the breast cancer train.
Sitting here on a packed train I am the only person with the tale tell marks of a cancer patient. The majority of my fellow travellers are white middle-aged men who, I’m guessing, are also on their way to work. Today I’ve had looks and glances – they range from ‘poor thing’ to ‘OMG she looks rough’ to ‘glad its not me.’ It’s amazing how attuned to other people’s reactions I’ve become and how their expressions and demeanour give away their thoughts. I don’t mind the looks and glances. In some ways they are to be expected because as humans we seem to stick with what we know and that includes our preconceptions of what ‘normal’ looks like. Aside from my incredibly pale skin, the absence of hair marks me out as abnormal in a society where women are still expected to look glamorous, feminine and girly.
The looks and glances are really just the tip of the iceberg. So much of it is hidden beneath the water when it comes to discrimination. From insurance to education to work in spite of anti-discrimination laws the discrimination continues. Some insurers either refuse to cover me or the premiums are so extortionate that I would rather take my chances and go without. Assessing risk and reward is not confined to actuaries and underwriters, cancer patients do it too. In researching potential university courses I might choose to study in future, with a view to a new career direction for the next phase of my life, I’ve discovered many include the entry criterion ‘must be in good health.’ Hmm… I’m a cancer patient still undergoing treatment. I’ve had major surgery and six rounds of very toxic chemotherapy. I’m still having Herceptin. Although the cancer is being driven into remission, my body has been through so much its doubtful my health will ever be considered ‘good’ again. Being rewarded with ‘no evidence of disease’ includes taking the risk of heart problems, osteoporosis and PTSD. If insurance and education aren’t big enough contenders for discriminatory action, there’s also work. This has been a revelation to me particularly as I worked in HR many years ago and was proud to be employed by a company with very high moral and ethical standards.
In spite of laws to the contrary, discrimination appears to occur at every stage of the employment relationship. My recent research has unearthed employers, including Government departments, who ask about health and sickness absence as part of the application process. Others who fail in their duty to make reasonable adjustments and yet others who refuse to accept that cancer is a disability. Like white stilettos and ra-ra skirts, I thought these kinds of behaviour were left behind in the 1980’s. I was wrong.
I sit here trying to weigh up whether the disability, including the psychological challenge of the life long threat of cancer returning (thus thwarting a long life) or the discrimination arising as a result of the disability is most distressing. There is no doubt they both cause significant distress. My thoughts have come to the following conclusions:
Cancer, like other disabilities is distressing. It wreaks havoc and destruction not just for the patient but for those around them too. Cancer, like other disabilities, is not a choice. It happens and you learn to deal with it. An unhappy co-habitation arrangement if you will.
Discrimination is distressing. It adds to the burden cancer and other disabilities create. It adds to the burden emotionally and psychologically, it strips away dignity and leaves the victim feeling devalued and abused. I don’t like the word victim but those who are discriminated against are victimised, singled out for different, less favourable treatment. Unlike cancer or other disabilities, the act of discrimination IS a choice. People chose to discriminate (or not). It could be argued that some areas of society discriminate out of ignorance – young children for example may not realise what they are doing. It seems more doubtful that adults in positions of responsibility are acting out of ignorance and fail to realise the impact of their actions.
In answer to the question ‘Disability or discrimination – which is most distressing?’ I conclude that discrimination is by far the most distressing simply because it is within our power to prevent it yet we fail to do so time and time again.
What are your thoughts?