On the Good Ship Disability: Are you sundeck or steerage?
'...there can be aimless and empty days with a sense of going nowhere. Life in steerage can be desperate, lonely, unhealthy, disabling and depressed'
I have not been on an ocean liner but I am well aware of the great contrast between conditions on the upper decks and down in steerage. So, who is on the Good Ship Disability and in what conditions are they travelling?
Well, to start with, there are disabled babies, children, teenagers, adults and elderly people. There are family members, carers, friends, advocates and buddies. In close association with these first two groups are people in, often quite small, campaigning organisations who strive against the odds to raise awareness about needs, to generate more enlightened attitudes amongst the public and to set conditions for better lives for disabled people.
Then there are people in the larger charities and social enterprises exclusively focused on disabled people and providing services, advice, information and other relevant and essential support. Next are people in such public services as social care, health and education who might or might not focus only on disabled people. Similarly, there are academics scattered through our universities and other worthy institutions. Last in my list are people in private agencies working to generate profits.
In all of the organisations listed above (and forgive me if I have failed to mention the category that you are in) there are people working without pay because they feel driven to do so, people volunteering in various schemes and people who are paid workers.
The design of ocean-going cruise liners dictates that the best spaces are limited and therefore available only to the few. Here, on the sundeck, there is warm sun to luxuriate in, pools to swim in, star filled night skies for the romantics, sea breezes, fresh air, healthy sports and games, food and drink for every taste and friendly staff eager to meet every desire and whim.
On our Good Ship Disability, the minority enjoying the sundecks have enjoyed a decent education, have paid employment (extremely well paid for some senior managers), paid holidays, sick pay, pensions and comfortable retirement to look forward to. They might even be provided with private healthcare.
With their jobs will probably come a warm and safe office or other workplace, travel (first class for some) and other expenses, paid work trips in the home country and abroad, support through crises, the conviviality of the workplace and the warm feeling of belonging to a team or a group. With paid work can come a sense of purpose, being needed and progression on a career path. Nice!
Descending to the lower decks and steerage, it is a different world with the throbbing of the engines, the smell of oil, cramped spaces, stale air, short glimpses only of sun and stars, limited choice of food and drink, and polite waiters replaced by surly canteen staff.
But this is where the great majority have to be on our Good Ship Disability. Here, paid employment and all the benefits it brings are available to very few. Education might have been second rate and uninspiring. For those who have a home (many do not) there might be insufficient money to pay the rent and keep the place warm. The home might not be a safe place and money for decent food might be a rare luxury (and then a lack of money for fuel to cook it). Neighbours might be anything but neighbourly. Illness can be more frequent, life-expectancy can be uncertain or short and the struggle to keep fit and healthy subject to the vagaries of crowded and often inadequate public health services. Travel might be difficult or impossible and, once out of doors, the 'community' might be indifferent, dismissive or hostile.
With reduced opportunities for any sort of day-time or evening occupation there can be aimless and empty days with a sense of going nowhere. Life in steerage can be desperate, lonely, unhealthy, disabling and depressed.
There are many decks on our Good Ship Disability with conditions deteriorating in the gradual descent from sundeck to steerage and it is interesting for each of us to evaluate our own conditions – our place on the ship. It seems to me that there are very few disabled babies, children, teenagers, adults and elderly people on the sundeck. I wonder why that is.
Comment by Peter Limbrick, October 2013.