If you are looking for my new blog post, as of April 25, 2014, keep reading below.
In looking over my blog, I realized I have not really given much biographical information here. I will try to fix that with this here blog post today.
I was born in 1969 a month early, but a month after the moon landing. A born geek, I didn’t want to miss it!
As a result of being born early, I had low birth weight. I was three pounds six and went down to two pounds fourteen ounces. I also had a low Apgar score: two. In addition, the doctors thought I might have been and I am quoting my late mother here: ‘…mentally retarded, had possible cerebral palsy and might have had hydrocephalus…’ In addition I had crossed eyes.
It is clear to me that if I were born in this day and age, I would not be around or allowed to live, given some of the things I have seen on the lifesite news website. Apparently us preemies are too difficult to be bothered with. Consider this little gem from After the Error:
In the fall, I attended a public bioethics talk at the hospital where Annie died about discharging, planning and community services. The speaker, who is a physician and policy strategist, explained to everyone how the government makes funding decisions and how the bottom line is that there will be no more money for community services for disabled children. She suggested that it was important to ‘think critically about quality of life versus salvageable life’ and questioned whether 24-week preemies should be resuscitated. I was disturbed by this because I think these are societal decisions that need public and parental input. [Susan McIver, ed., After the Error, p., 13]
So we can see that there is an assumed bias against handicapped and retarded...err disabled and developmentally delayed children. I used those slurs deliberately, by the way. It’s because those who think they have wisdom to tell us that the different are better off dead might as well use those terms; it’s more intellectually honest, no?
By the way, you should be feeling outrage at what I just wrote…
In any case, I had a low birth weight. My eyes were uncrossed in surgery at age two; after that I began to walk. I had numerous colds when I was younger; at one point I think I had pneumonia when I was four. In all, I had what is called failure to thrive. It’s where a preemie is fed properly but doesn’t gain weight. That’s me. My mother was always on at my doctor though about my milestones and my motor skills for some reason.
I remember my mother recounted to me that she took me to the hospital when I was really sick and she was grilled closely about why I wasn’t gaining weight. The take-away was that the doctor felt I was being abused on account of how small I was. Again, had that happened today, I think that mum would have found me removed from her care and custody. Lord only knows what would have happened to me after that in some biomedical circles…
As well, I have a learning disability: it’s undefined but I think it has to do with numbers and some abstract conceptualization. I say think here because I was never tested specifically: my mother was convinced that I didn’t have LD and so refused to let me say I had it. Had things been different, I would have been tested long ago. On April 12, 2014, Wesley J Smith tweeted about an Oxford biomedical ethicist who is now proposing that we test for IQ in utero, and dispose of those who score low. How you are to administer those tests is a mystery, but it is clear that there is an elitist viewpoint on this subject. It is clear, though that someone else is driving the ethics that we think we share, and that those of us who are obviously not smart enough to know anything are being subtly coerced. But I digress…
My health problems, however, do not stop with just my psychological well-being. In any case I also have a heart condition, contracted in 1992 and I was diagnosed with a heart arrhythmia in about 2007 or so. Bear with me, my biography gets fuzzy at this point.
I have reason to believe that I may be on the autism spectrum. I have had people call me – when much younger – the little professor. Asperger’s (no longer a DSM diagnosis on its own, by the way) is also called the little professor syndrome. Interesting that the implied criticism of knowledge and learning is embedded in that nick-name…
But I digress. In the late 80s my nickname was Data – as in Lt. Cmdr. Data of Star Trek The Next Generation fame. Big books didn’t intimidate me. They still don’t. Most recently, as in the last six months, I have had someone tell me – without me asking – that I remind them of Dr Sheldon Cooper, PhD. Not sure how I feel about that…
The point for me is that there are times when I feel like I don’t know the proper things to do in some social situations. This presents itself as me not reading people’s emotions or being aware of some social niceties that everyone else seems to ‘get’. I think I am exaggerating here, but still, there are times when I feel like a proverbial social fish out of water…
I have been following the research and news on autism with some interest as a result of this hunch of mine. I have nothing concrete yet, but the more I learn the more I identify with this sort of spectrum for myself. However, hopefully I have grown in wisdom, because I seem to be able to hold my own socially. There are times, though…
I remember watching a CBC passionate eye documentary called ‘The Boy Inside’. It followed a thirteen year old boy with autism as he progressed through school. I was at my cousin’s place (Hi, Luis!) watching it and he picked up on how upset the film was making me: I could have been that kid when I was his age. The difference though is that he was getting in-class support and support from his family; I didn’t. I know it was a different time in 1983, but still…
It irks me that people will pigeonhole others at a whim. I try not to do that, and hope I don’t. However, I remember a friend of mine – who had a physical disability – being told by her grandfather’s girlfriend at a family Christmas party we used to drown children like you at birth… gee, thanks!
At least that was to her face. Now, parents aren’t told. I got a tweet a while back informing me that in Belgium now, doctors don’t have to get patients’ permission to kill them. Wow. So that’s a little different than asking to die, ya think? In addition, in Canada, one doctor is on record as saying that ‘doctors do not need to inform patients about their care.’ (Falconer, 2009) As well, doctors in Canada don’t have to tell you about orders on your chart even when it concerns you.
Back to my biography. I went to the hospital in 2008 or so with a heart arrhythmia. Being Aspie and logical, I went to the hospital where I was diagnosed and presented myself at their emergency department. They’d have my records more easily, no?
Told the nurse at triage the situation, including that I didn’t smoke, drink or do drugs.
Waited about an hour and a half and the doctor comes in, looks me over without touching me and asks
So…how long have you been using crystal meth?
That is the stellar level of care and service I have come to expect and admire here in Ontario. And I don’t think that care level is a mistake. I think it’s deliberate. Remember the quote from After the Error, cited above.
My mother studied philosophy at U of T as a mature student. She focused on ethics, particularly biomedical ethics at the time. She was of the opinion that there were some lives not worth living: sick infants and very sick and dying people. I remember we used to have discussions: I was always appalled by her position that we could kill people. It never seemed a safe bet to me. Her response in one heated debate was ‘would you want to be ill and have to wear diapers?’
So that’s her jumping off point: diapers. I didn’t have an answer for her then. I do now, but that's a whole other blog post... Yet in these discussions, she never gave real world examples, nor did she give any diagnostic options.
Kind of like today. When families aren’t entitled or have the right to know anything beyond the horrible. I think it was Elisabeth Kubler-Ross who said that when dealing with dying people that we should never take away their hope. I remember reading that. So what does that say about the worst case/only option scenario? Hm?
What really worried me in later years is this: her position on infanticide was entrenched. Was that because of her experience with me? Did she look back at the experiences she had and decide if I had it to do over…
I will never know, but that is in the back of my mind. What is it they say? There but for the grace of God…
But we have moved from a theoretical discussion of these issues when I was a teen and mum was in
university to a covert, stealthy move toward making these unmentionable actions real-world. To a point. If
there’s no discussion and no documentation, did it really happen? The answer, of course, is no.
Oddly enough, when she was dying of cancer, my mum never mentioned assisted suicide…
But she was ‘for’ it.
So anyway, there’s some biographical information about me. I hope this fills in some gaps in knowledge for
you. I still feel strongly that we can and must do better in caring for those who are ill and dying and disabled –
and I mean care other than offering death by default. I know. It’s too easy for me to be marginalized…I’ve
already experienced that in my life. I don’t want to experience it in my death.