Adversity is a word that you often hear as a foster carer. It sits hand in glove with the profile of many children who come into the care system and the hardship that some go through can leave lifelong scars.
We have all experienced adversity at different stages in our lives, such as the death of a relative, the end of a relationship, or financial troubles. Yet with time and support, those scars tend to heal as we change our circumstances and improve things. I suppose the only people who can similarly experience lifelong adversity are those with Disabilities or serious life-limiting conditions.
I wasn’t born with a disability but I grew up around it. I lived in a house with my parents, siblings and my wheelchair-bound grandfather. When I was eleven, my grandfather died from complications caused by Muscular Dystrophy; the very same condition that I would be diagnosed with six years later.
No one ever thought that my brother and I would go on to have Muscular Dystrophy because so little was known about it back in the Seventies. Being diagnosed at seventeen filled me with anger and bitterness as my life goals had been taken away from me. It took me a decade and a half before I really came to terms with it all. Perhaps the hardest part for me was knowing how the illness slowly chipped away at my grandfather, leaving him in an undignified way towards the end. This will inevitably be my fate. I knew it then, and I know it now, which makes the acceptance part very significant.
I have seen both sides of disability, firstly not having it and being able-bodied, then having it and not being fully able-bodied. Caring for a life-limiting condition is not the same as caring for a life-limiting condition. Perhaps I have the unique perspective of both points of view.
Adversities that come with it
As expected, I became disabled slowly over time. I trained to be an engineer, and I worked in heavy industry for as long as my condition would allow. I spent several years trying to get back into work and ultimately failed due to my disability. Frustratingly, I was often the best candidate in the interview until I mentioned my condition. Funny how things can change… this was my first taste of disability adversity, the way employers don’t see beyond the heightened insurance risk or the perceived lower productivity.
Gradually over time, I’ve become more aware of how these new kinds of adversities creep up on you. For a person with a disability, adversity isn’t something that stands alone. It also comes with discrimination, bigotry, attitudinal prejudice, bullying and exclusion. It can present itself in cruel and intentional ways, like being laughed at and called names because you look or walk differently, and not being given equal opportunities. Some are unintentional, like events that don’t have proper disabled access. Society itself has a lot to answer for in the way people with disabilities are treated, especially considering that 1 in 5 people have a Disability of some kind.
Most people only see disability that is either extreme or obvious. Due to their own discomfort around serious disability, they simply form a negative opinion about it and apply that to the word in all circumstances. Most disability is hidden, like diabetes or hearing impairment. I can’t tell you how many times I’ve been told to get out of a disabled parking space because I don’t “look” disabled. I have Muscular Dystrophy, not man flu…
I’ve recently become involved in a project to examine why more people with disabilities are not actively recruited to be foster carers, and don’t engage with employers or events. This has allowed me to highlight some of the key issues surrounding the lack of proactive inclusion for disabled people in society. From first-hand experience, I know what it is like to be a foster carer with a disability and be told I shouldn’t be. Society doesn’t engage with disability because historically, all the way back to antiquity, a person’s value is judged on their productivity.
Even now, how many companies have a ‘piece work’ production mentality, where the more you do, the more you earn. It’s called the pay packet society. This ethos is carried to this day into the mainstream, and it filters down through generations where disability becomes a label that paints all disabled people as incapable of anything, in complete ignorance of their actual skill set. This is the reason employers don’t want us, combined with the obvious insurance factors, the health and safety aspects or the provision of support they need to put in place to facilitate disabled people in the workplace.