Raising the unbearable

On my news feed I came across an article titled, "I love my disabled sons, but raising them can be unbearable". I stopped reading after coming across this sentence, in the very first paragraph: "Yet I can imagine only too easily how Tania Clarence did the unthinkable and killed her children - because the pressure of caring for them is like being buried alive."

Eventually, out of interest but also from respect (knowing so well the difficulties families face raising severely disabled children) I read the entire article.  Opinions may not matter, but discussion does, even if it is inside our own heads where, rarely, change happens and a different perspective is gleaned. Perspective, though is not much more than a fancy word for opinion. I looked for a place to comment, a few sentences to convey my concern as parent of a catastrophically disabled child, but there was none.

I wanted to say, "Thank you for writing this thought provoking piece and for making many of the struggles, common to families such as yours more visible. First time coming across your article though, I stopped reading after, 'Yet I can imagine only too easily how Tania Clarence did the unthinkable and killed her children - because the pressure of caring for them is like being buried alive'. I'm not quite certain how you can 'easily imagine' the 'unthinkable' but that has nothing to do with my actual concern over the sentence as a whole and what it signifies.

Parents of severely disabled children have a rough time of it, one that can easily devolve to 'catastrophic' in terms of quality of life. Very little or next to no assistance is what marks the lives of such families in many countries, even developed western nations. I've been living that life for nearly 18 years with my son, whom I care for continually at home and who is catastrophically disabled with a life-limiting condition. Each day is a struggle which will not cease even during night, even if all the morning will have to show for it, is that it was his final night on this earth. It doesn't end, until it does.  

The author aptly ascribes to this life the sense of being buried alive. Indeed, I know this to be true and have felt the very life force drain from me as endless intense care were squeezed from me like water from a desert stone. But not once did I think, 'Well, I'm being buried alive, I'd better kill my children', as is suggested by Henrietta Spink as a reasonable thing to contemplate. I would die before I would ever consider proactively taking the life of my child, as Tania Clarence (or Robert Latimer) did. Context in such a situation is critical. We must understand the circumstances and it was her own circumstances and the situation of Mrs Clarence that spurred Mrs. Spink to write her article.

The personal ethics of a parent faced with the prospect of raising a severely disabled child will stem from their mindset, as it creaks and breaks under the strain. When you add in the fatigued mind of someone who suffers from chronic sleep deprivation and seeks but finds little support, be it from family, friends or government assistance you have a recipe for disaster. While we are changed by our parenting experience, though bullied into growth as extreme caregivers, pressure does not always a diamond make. Surely, without the stress and fatigue, the financial hardship (having lived at the poverty line for nearly 18 years now, I know) different decisions would be made?

What prompted Mrs. Spink, with so many years of experience in every aspect of caring for not one, but two, severely disabled children to say that it is 'easy' to imagine killing her children, still baffles me. I understand that having these thoughts are troubling. I get that having these thoughts is not anything like actually doing it. I also get that Tania Clarence's state of mind was such that she believed she was doing her three kids a favor by murdering them. It doesn't matter that she was ill-informed though, since her children, suffering from SMA type 2, could easily have gone on for several years without great suffering. It is equally possible that they would have suffered, (although the likelihood that all three children would go through the exact same experience is not overwhelming) the thought that, after having gone through a horrible experience and watching your child die, that you had two more such experiences already unfolding, your future suffering mapped out in front of you, could certainly offer insight into the state of mind of Tania Clarence. 

The quote, "every day Tania knew she was watching them move slowly and inexorably towards certain death" sums this up nicely. Except that the first thing you do when you have understood that your child is going to have a severely shortened lifespan is accept the fact, then work forward from there. No one stays stuck in the denial stage for years, do they? The daily difficulties of maintaining a semblance of family life in the face of death simply forces you beyond that first impulse to deny, unless you aren't actually caring for your ill or disabled child at all.  More questions remain than can be answered. Perhaps the husband and wife discussed the issue, even planned it, with the husband conveniently away on business. Perhaps he didn't have the stomach for it and so his wife decided to take matters into her own hands, smothering her children to death and then making a half-hearted attempt at suicide.
Eventually Mrs Clarence, who was financially secure, was found incompetent to stand trial and put into a psychiatric hospital. After a relatively short time she was allowed day-leave. Thousands of parents rallied around her to offer their support. She was 'brave', 'decimated', 'overwhelmed', 'courageous' and so on and so forth. Personally I didn't read a single comment or article that tried to kick her while she was down. A pity. Almost all comments were of course from individuals who had little idea of what her life was like as a caregiver. There are so many details surrounding this event (round the clock nurses, previous depression, support, antagonistic social services) that knowing her circumstances is difficult in the extreme. And state of mind is what most people seem to think it comes down to. That and the resulting, personal, decision some make in deciding the fate of their children. I don't feel sorry for Mrs Clarence since, after all has been said and done, she may have robbed herself of a future with her children (and as some twisted people have suggested, is punishment enough) but she robbed her children of any say in the matter. As they would grow older and understand more (which was the prognosis) they could convey, in ways that parents know, whether their lives had become more about suffering than about living. She robbed her children of any hope. And while it may seem to some that the word hope is sorely misplaced when discussing the inevitable death of a child, you could not be more wrong. It is exactly hope that lifts up countless parents to collect themselves after they have fallen and take another step towards the future. We grant these parents the right to hope, we wish them well, wish for them to have the strength not to implode, but if they do, we will all rush in and help, right? In theory at least. But what about the children? No voice for them at all? Because they are too young to understand? Only a mother should decide? How about erring on the side of caution?

This requires parents to be educated in navigating the trenches of extreme parenthood. But that manual has not been written yet. It is being pieced together by parents and caregivers exchanging information and support, on the Web for example in countless support groups and charities. But there is very little trickle-up effect to government and local councils are often hamstrung by government agencies.

And yet different parents, in nearly identical situations, will react differently. Is this because of their upbringing? Is it because it is impossible to quantify the actual differences in support some parents get? Some are simply stronger than others? All true. Mix and match as you please, season with whatever further convolutions you are partial to.

Despite opening her article with such a loaded sentence it is after all, just her opinion. It's not that she is deciding public policy for all such families in her district, so she really does not need to defend her position. She calls it as she sees it. Even if we cannot though, to the satisfaction of everyone, equate the circumstances of one family to another we can look at the conspicuous absence of a large number of families making the same devastating decision. We hear little or nothing in the media about the large numbers of families with severely disabled children, the absolute majority of such families, where the same decisions that led Latimer and Clarence to decide to kill their children are for them, not viable realities.  The simple fact is that they choose to live, as terrible as it might be, until nature takes its course, or they find that there is no other alternative. Mrs. Clarence's children still had quite a way to go before this was the case. It seems to me a basic human right not to have to worry if your parents are going to kill you. With an ill or non-verbal child, do we suddenly take away that right?

Spink ends her article with, "There are days when I don’t know if I have the strength to carry on. And that, more than anything, is why my heart goes out to the poor, beleaguered Clarence family."

Is this pity, presented here as a defense of Clarence? Pity is always the first thing a parent of a disabled child says, is not what they want. Is there a place for pity? Or should we struggle on, beleaguered, broken, because what else can we do? Certainly, contemplating whether you have the strength to continue or not, is a luxury afforded to few. If it is empathy, then it comes from the author's personal acknowledgement that she feels or has felt close to the brink. The brink of what? The only option is killing someone? Alright, I can accept that for some that is the only option they see. But then Spink opened with that acknowledgement, didn't she?

Her solution, the one that Spink maintains is understandable, i.e. conscionable, is not the norm. It is not the first thing a parent thinks about when considering the future of their catastrophically disabled child and I feel it is misplaced in an article which means to discuss the urgent necessities and traumatic nature of raising severely disabled children.