When your unfit for work and unable to juggle the average life path with hospital appointments and illnesses, you get good at picking up versatile hobbies.
When your ailments, conditions and disabilities get in your way of your hobbies, it can be frustrating and upsetting.
When your ailments, conditions and disabilities get in the way caring for other ailments, conditions and disabilities, making every single hobby impossible, it is, for me at least, unbearable.
When hobbies become unenjoyable because other people leave a sour taste in your mouth, sometimes it’s not even worth the fight of getting to them.
My back’s been rather bad as of late, due to a number of factors. Weather, limited access situation, illness,, and the general discontented skeleton the rest of me is attached to. I’ve taken to lying down most of the time, which is fine until the upper part of my back flares up, or the leg that needs to be bent almost all of the time can’t bent enough.
And it means everything I need gets laid down on top of me, and it crushes into my ribs, making my back even worse. I have spent every other day these past few weeks, just lying in bed, awkward angles to support malformed joints and bones that still don’t bring me comfort, and only my radio for company.
So imagine how upset I was that, after all of that, I still tried struggled through one morning to use my computer only to be met with a discussion on eugenics. Even worse, this discussion was had by two friends I never thought would have these opinions.
It started out as a discussion about the bedroom tax. The standard “why should I pay for people to live beyond their means?” argument which shows they don’t know much about living in council houses (call a spade a spade), which then escalated. It went on to the agreement that people who knowingly have genetic conditions hardwired into their DNA, should not have children, and foetuses who are found to have severe disabilities to be aborted, and to parents being sterilised just in case, and in the case of a child being born with severe brain damage or some other non-genetic hereditary disability, they should let nature take it’s course and let the child die peacefully should it have difficulty after birth, instead of helping the child fight to live.
Now, I’m not egotistical enough to think that just because I know these two people and their choice of place to have this discussion was where I could read it should have stopped them from discussing it. They can talk about whatever they like. That’s what these places are for.
But I, as someone with a genetic condition, who grew up with other children with genetic conditions, as well as un-genetic conditions, I am offended, appalled and upset to find that these are their opinions. That, quite essentially, could be me, my family and my friends they were talking about. I don’t care how, if confronted, they’d choose to separate me from those people they were talking about, the fact is, I am part of that group they’re wishing to eradicate. And for what? To better the gene pool? For the greater good?
There’s no other way to describe this, this is nazi territory.
I struggled with a laptop crushing into my ribs to read that?
First and foremost, it is both the parent’s decision what should happen to their disabled child. It is the parent’s decision if they want to give birth, as planned, to a child that happens to be disabled. There are people who believe that life begins at conception, there are people who, under no circumstances, would agree to an abortion, there are people who cherish every life they are blessed with, regardless of religious beliefs. If that life happens to be a bit different, take a bit more time and effort to look after, then so be it. That is their decision, nobody else’s. You have no idea what that child has to offer, or what life has to offer that child.
If the parent knows they can’t cope with having a disabled child, which is a full time job, with a lot of extra costs and considerations, then it is their decision to abort.
I’m sure we’ve all heard the argument about Down’s Syndrome, now they’re saying it about Cystic Fibrosis, Osteogenesis Imperfecta, Musculur Dystrophy, and Dwarfism. From purely an evolutionary way, I understand Why people would want to erradicate these conditions from the gene pool, but you can’t just separate these conditions from a person.
What really got to me, though, from what these so called friends of mine said, it was what I envisioned after reading those words.
Let’s say thirty years ago the more recognisable, easily detectable genetic conditions came up on an alert system during the first scan of a foetus, and doctors did force the mother to abort, and then sterilised her to ensure there was no risk of having to abort another baby. That’s a good portion of my childhood friends taken out of existence.
Let’s say they “allowed severely disabled children to die as nature intended” by not helping a child struggling to breathe, pump blood, stay warm, stay alive, after the initial diagnosis. Variant conditions like cerebal palsy, or just born too early, for example.
That’s most of my childhood friends taken out of existence.
And then there’s me, who didn’t flag up with a genetic condition at all. I wasn’t even diagnosed with a genetic condition until I was sixteen. What sort of childhood would I have had? Would there have even been a demand for special need’s schools? I couldn’t get into mainstream school, in reality, so I might have been forced into being homeschooled instead of attending a very empty special needs school in Liverpool. Would I have got even the mediocre education I got in reality, or would it be even worse?
But then if having a genetic condition was something to erradicate, would I have have been killed once they knew something was wrong with me at 6 months old? Would I have lived a life kept secret from everybody? If that was the case, I’d have died at 20 months old at most, with no doctor’s care or operation which, in reality, saved my life.
Or because they didn’t know it to be a genetic condition back then, let’s say I slipped through the radar up until I was 16 when my diagnosis got changed. I imagine I would have been friendless and lonely. I wouldn’t have grown up knowing my dear friend who passed away a few years ago, cos she’d have been forcibly aborted. I can’t imagine it being a happy childhood, my friends at school made my childhood good. The special needs bubble was my world.
And forget about all the way through secondary school and sixth form, this alternative reality is too far from my experiences for me to figure out how much different that part of my life would be. All I can say for sure is, in this alternative reality, I’d have been forced into even a lower standard of education and had not much point to thrive.
And then what would have happened to be when my diagnosis changed? Would I have been taken in or left alone? Best case scenario I can imagine, they’d leave me to suffer my condition getting worse and sterilise me just incase. Worst case scenario, I’d have to opt in for an operation somewhere along the line, and “complications” would arise which they wouldn’t save me from.
In as many as 800 words, their discussion changed the life I grew up with as I knew it. And this, this is what could happen if things carry on the way they’re going.
Two days later, Councillor Colin Brewer, who said disabled children should be put down, was back in the eye of the twitter media. There was a DNS artcle being retweeted about him, which basically outlined the fact that his apology before he resigned was worthless. He obviously meant what he said, he even talked about how people had agreed with him! He then compared disabled children to lame lambs. In fact, he used the graphical description of bashing a lamb’s head against a rock to put it out of it’s misery, and indirectly said that’s what we needed to do for disabled children.
It’s frightening. This is what people think? This is how people want to treat Human Beings? We have been down this road before, do we really want to repeat it?
But unlike my two friends, who masqueraded their opinion under the guise of it being better for the disabled child, and the parents, and future generations, this man just cared about the cost. Disabled people cost the government money, we’re a financial drain on society with apparently not much to offer, so we should be put down. Do you know what it’s like reading words like that?
Figures have shown that the elderly cost at least half the total amount of welfare paid out, by the way, with their pensions. Should we take a leaf out of Logan’s Run or Soylent Green, perhaps, and have people opt in to suicide programmes, just to save money?
If people get told their a burden so many times, they will feel like a burden and opt to kill themselves. They will feel like fighting is no longer worth it, and that everybody would be better off if they killed themselves. Their enjoyment of life will be sucked out of them.
Is this really the path our society wants to go down? Make people want to kill themselves to save a bit of money for the government, when the government have a lot more to answer to when it comes to ill-thought out spending sprees than somebody’s benefits and healthcare costs.
Which takes me to over the weekend. To add insult to injury, I wasted precious effort arguing with people about the bedroom tax, because a poor lady was pushed over the edge by it and commited suicide.
But apparently, because one factor isn’t normally responsible for someone killing themselves, despite it explicitly saying so in the lady’s note, it can’t possibly be the fault of the bedroom tax or the government. Especially when she was offered a house and turned it down, so obviously she caused all of her own problems!
My family were offered a house once. We had to turn it down and wait five more years to move, because the house they’d offered us had three steep steps (think a run-down, immensely smaller council house version of the houses in Baker Street) to get in, no way of getting a ramp put down because the ramp would have disrupted the path, the doorway was too narrow to get my wheelchair in anyway, the bathroom, according to family members who could get inside, was split level so that the toilet and sink were seperated by a step. The nearest bus stop was half an hour’s walk away, and none of the nearby shops were large enough to navigate in a wheelchair.
Those were the problems we were met with. It’s not a hard stretch to say this lady would have been faced with her own array of unsuitability issues. This is a lady who battled depression, who didn’t need the harrassment, the condesension and or the half-arsed solution. This lady felt alone, lonely, abandoned. Placing her out of the way of everyone she knew, making her start a brand new life, fork out money she didn’t have for a move she was not mentally well enough for, all would have been cruel. It is no wonder she felt like the best solution was to take her life out of the equation.
We should respect her suicide note as saying exactly how she felt: The bedroom tax pushed her over the edge.
I am fed up of the non-stop barrage of hatred spewed in the direction of people who need help and understanding. I’m fed up of arguing. I’m fed up of ignorant people.
But once again, if I’m not part of the argument, then I’m letting the ignorant people win without a fight.
But saying that, I think a few more days without a laptop crushing into my ribs, when my back’s already at it’s utmost unco-operative, would be good.