My mother and her siblings often went to school with cardboard in her shoes, to mask the holes. Her father was regularly a victim of anti Irish racism, despite having his health ruined fighting for King and Country (Ireland was part of Great Britain then). My mother remembered times before the NHS, when medical treatment was a luxury. Her own mother had a "special" birthday present aged 18, all her teeth were pulled out. This was a common practice for poorer people. It meant avoidance of expensive dental treatments later in life.
As for unmarried mothers, they were complete outcasts. If your daughter was up the duff,out of wedlock, in our community (Roman Catholic working class), she would be shunted off to a convent and the baby would be given up for adoption at birth. Cover stories such as "recuperating from consumption" were invented. One of my mothers elder sisters apparently underwent this awful process. This was done to "spare the family shame". These attitudes are discussed in the song Embarrassment by Madness.
Embarrassment
Received a letter just the other dayThen there were the Victorian attitudes to mental health and handicap. People were locked up in asylums, medicated. Those with Downes Syndrome were "put in homes". Often these homes were places where all manner of physical and sexual abuse would occur. Parents of Downes Syndrome children were told "it will be the best for everybody, they will be happier". Of course no one every really stopped to consider the person who was being incarcerated. In Victorian times it wasn't unknown for these institutions to throw open their doors and charge the public to laugh at the inmates.
Don't seem they wanna know you no more
They've laid it down given you their score
Within the first two lines it bluntly read
You're not to come and see us no more
Keep away from our door Don't come 'round here no more
What on earth did you do that for?
Our aunt, she don't wanna know she says
"What will the neighbors think,
they'll think We don't, that's what they'll think, we don't"
But I will, 'cause I know they think I don't
Our uncle he don't wanna know
he says "We are a disgrace to the human race",
he says "How can you show your face
When you're a disgrace to the human race?"
No commitment, you're an embarrassment
Yes, an embarrassment,
a living endorsement
The intention that you have booked Was an intention that was overlooked
They say, "Stay away Don't want you home today
Keep away from our door Don't come 'round here no more"
Our dad, don't wanna know he says
"This is a serious matter
Too late to reconsider
No one's gonna wanna know ya"
Our mum, she don't wanna know,
she says "I'm feelin' twice as old",
she says "Thought she had a head on her shoulder
'Cause I'm feelin' twice as older I'm feelin' twice as older"
You're an embarrassment
When I was growing up in the 1960's many of the insults commonly bandied about in the playground,, had their roots in the Victorian attitudes to mental health and disability. If you answered a question in class incorrectly a teacher would bellow "Are you a retard". If you missed an open goal for the school team, making an air shot, the call would go up "You Spastic". I even worked at a major financial institution in the 1980's, where one particularly vicious member of staff would continually set little traps for a member of staff and then ridicule him when he tripped up and made a fool of himself. He coined the nickname for this member of staff, who wore a hearing aid, lovingly calling him "Mong". As with all bullies, this person had a little clique. As I was a contractor at the company and not on the permanent staff, I behaved in a cowardly fashion and allowed what I saw to pass. I knew that said individual was vindictive and I knew it would result in the end of my employment if I commented. As with all cowards, I got my just deserts. The individual decided to have a go at me and started some extremely unpleasant rumours about me. When I left, he had a special T shirt made, with a very vile and obscene statement of a personal nature on it. I was presented with this and like all cowards, took the punishment, pretending to laugh along with it. I met another member of staff, a few weeks later for a drink. They were amazed that I'd laughed along and not taken him to task. I responded that "It was all just banter". My friend stated "It isn't, he's making everyones life intolerable and we're all sick of his disgusting behaviour, we have been trying to get him disciplined for the way he goes on". Shortly after that, he was made redundant and given a decent pay off.
The incident gave me reason to question my own behaviour. I realised that such things can't be tolerated. If I had said something at the outset, then the whole thing could have been nipped in the bud. As it was everyone had to suffer for months at the hands of this idiot. Even worse, it seemed that everyone thought they were the only person who found the behaviour repulsive. Even if the worst had happened and I'd been sacked on the spot, I doubt that I would feel worse about what happened than I do now.
When it comes down to it, I believe that society today is better for our rejection of bullying, rejection of racism, rejection of sexism and rejection of discrimination against the disabled. Of all these, discrimination against the disabled is the one that is still tolerated. Perfectly intelligent people are treated like second class citizens, just because they need a wheelchair for mobility. People who have learning difficulties are treated in an even worse manner. By and large as a society, we accept this.
I have been exchanging emails this week with several disabled rights campaigners in Barnet. I must say that sadly, many of the attitudes I describe in this blog seem to prevail in certain corridors of Barnet Council. It seems that people with special needs are not treated as human beings with dignity. It seems that their rights and needs are not considered when decisions are made. The primary driver for all decisions seems to be financial, rather than the needs of the human being in question. Sometimes it seems that rather perverse decisions are made that neither save money, nor cater for the individuals need. It seems they are made to make life easier for certain senior people within the organisation. Often no thought is given to long term costs. Decisions are made to save pennies today, which in the long term will cost thousands of pounds.
What is never considered in the care programs for people with needs, is that the more active and engaged they are, the better their general health. If they have better general health and are happy, the cost of the care package will ultimately be far cheaper. I was discussing the way men and women with care requirements are different. One statement (this is anecdotal and may well not be true, so please don't be offended. I know it is a generalisation) was made that when men with disabilities are left with nothing to do, they are plonked in front of the telly and will sit and watch it all day. With women in the same situation, they will sit in front of the telly all day whilst eating biscuits and chocolates. This means that often they are far heavier and have all manner of other issues which aren't so commonly seen in men (diabetes, heart conditions, etc). I'm not a carer so I don't know if this is true. What I can say is that having stimulating activities is a far better solution.
Two weeks ago I spent a week abroad with my cousin, she's my age (49) and has Downes Syndrome. She had a week in a very interactive group. What I can say without doubt is that at the end of the week, she was far more with it and far less withdrawn than she was at the start of the week. She actually has a resonably full program. Her sister, who liaises with Barnet Council, was told she has the fullest program of any Downes adult in their care. I have no idea if this is true or not, but I know for a fact that if it is true, there are a lot of people in the care of Barnet who's needs are being cruelly neglected.
This is a long and rather rambling blog. I felt I had to write it, because I have been troubled to understand where our attitudes as a society to caring for people have come from. I believe they are seated in the same place as the attitudes that saw blameless children labelled "Bastards" because of their parentage. I believe that as we've grown up as a society, to dump such cruel stigma for perfectly blameless people because of their parentage, we also need to move beyond the victorian attitudes to people who are in some way different.
It is a national, if not global issue. We can't necessarily change the national or global issues, but we can have a damn good stab at trying to change the way Barnet Council treat the disabled people. The best place to start would be for the Leader of Barnet Council to apologise for a Brian Colemans comments describing the disabled as "These people" and criticising the requirement for the council to provide transport for them
As for the whole cost effectiveness thing, the problem is that different services come from different budgets. A little spending by the local authority on proper activities for disabled people would save the NHS a lot in the long term as they wouldn't, for example, have to deal with issues like obesity, depression if people have more to do.
ReplyDeleteSadly, the local authority only sees the cost of the care. They get no credit for the savings, so what happens? Short term the local authority looks better, long term we as taxpayers pick up the costs. Joined up thinking anybody?