I am Spinal Muscular Atrophy type II.
I wrote this in response to the Tania Clarence murders of her 3 children with SMA.
I am part of you before anybody knows there is a you to be part of.
I am given to you by both of your parents, equally, although your siblings share a 1 in 4 chance of me being part of them also, so don’t take it personally.
You will conceal me until you are about 15-18 months old, at which point you will gradually start to disclose my presence, through your refusal to conform and develop “normally”.
You may crawl but you won’t stand, and therefore you certainly won’t walk, however much you are encouraged and goaded to by those closest to you (this is done out of love but also out of the fear that you might not be “normal”).
After an initial period of suspicion, and then detection and investigation, firstly by your parents and subsequently by increasingly more specialised medical professionals (which will include physical examinations, blood tests and ultimately a muscle biopsy), I will be exposed as your lifelong companion.*
I will most likely be presented as devastating news - an unwanted undesirable - by the professional relaying the results to your guardians, and hence it is likely that they will regard me in the same manner. And as you develop a sense of understanding, it is possible/likely that you will feel the same way.
That is because the prognosis of our life together will probably be presented as one that will be at best difficult, at worst desolate, with me being portrayed as the bad apple who will ultimately destroy not only your life (no doubt prematurely), but also the hope of any “normal” family life that either your parents or siblings may have wished for. I say probably because there is always the slightest glimmer of hope that the news will be given by somebody more enlightened in their thinking, somebody less pessimistic and more positive where physical impairment is concerned, somebody who is more informed and therefore able to inform in a realistic way. We/I can always hope…
Thus it is at this early stage of your life, before you are even aware of me, or that you have any differences, that you may well experience rejection by those closest to you… because of me; the severity of that rejection most likely dependent upon the basis of the informed or uninformed information given at diagnosis.
It’s most likely that any rejection will be temporary, an initial denial of “us” if you like, by your parents out of their fear of the unknown, of me, treating your difference as either a fault on their part (they have failed), or as some kind of bereavement, which they will usually (hopefully) come to terms with quite quickly.
The less likely form of rejection however may be complete, due to them feeling they will never be able to cope with the difficulties that I will cause you/them/the family, resulting in “us” being put into somebody else’s care.
The most rare and severest form of rejection, unspeakable as it seems, is when a trusted guardian decides that “ours” isn’t a life worth living and therefore, rather than letting you live with me, resolves that it would be better to end the ‘suffering’ prematurely…
Although an extremely rare course of action, as we have seen all too recently this does still happen. And although such a warped decision can be based on a number of contributory factors - e.g. the mental health of the person concerned, their social & financial status - the major contributory factor will be the misinformation, fear and negativity that surrounds me and the life of somebody with an impairment! Misinformation that is supported and perpetuated by a media, a medical profession and a social structure that still regards impairment as failure, as abnormality, and therefore something that needs to be hidden, cured or eradicated!
This is the prejudice that we/you will encounter more and more as we develop, although hopefully it will decrease for each new generation. However I fear that the striving for perfection - for a world without impairment, without undesirable difference, without undesirables (with the benchmark for that continually changing and lessening) - will continue and therefore be the way that such a decrease is achieved.
And although you will undoubtedly face many obstacles constructed by society (as it is society that will ultimately disable us), whether they are peoples’ prejudiced attitudes, institutional discrimination or physical barriers, probably the biggest obstacle you will face (in terms of your impairment and your limitations), and the main focus of your anger and frustration, at the outset anyway, will be me.
It is true that because of me, because of the physical impairment and limitation that I will impose upon you, you will encounter episodes of severe frustration, anger and even hatred towards me (and by association yourself and your body, because of your perception of what I have done to you and to it). This is understandable. I accept this. But ultimately it is an exercise in futility. I say ultimately because we cannot be separated and therefore the limitations will remain. However, that frustration, that anger, will perversely be good for you in that it will help you overcome many of those limitations, often by forcing you to create alternative solutions. They say that necessity is the mother of invention, and you will test that saying to its limit. And if you can’t do something for yourself then you will need to recruit others to help you… That is something you will have to do early on and get used to it. Do not feel ashamed about this. The sooner you can get over any embarrassment the sooner you can get on with your life!
Also, it’s not to say that I do not need managing. Initially this task will fall upon your guardians but later it will be your responsibility. Stay healthy. Exercise your breathing… Singing is an excellent way of doing this. Stay upright and try to exercise. Physiotherapy is good but swimming is better… and more enjoyable. Try to continue to do what you are able to do on a regular basis, because there is the adage “use it or lose it” and this is definitely applicable where I am concerned. You will naturally lose some ability as you mature anyhow, due to your body growing whilst your muscle infrastructure effectively stays the same. However this shouldn’t necessarily affect your dexterity, although this can obviously be different for each of you.
The main way to stay healthy however is psychologically. As I have already said there will no doubt be times when you feel depressed, frustrated and angry because of your impairment, because of the limitations I have imposed upon you. Or because of the way that society disables you, making you feel that you don’t belong, or that you can’t participate or contribute equally because of the way it is constructed. These feelings can be more destructive to your health, your well-being than anything else… Dependent upon the way you deal with them.
Don’t allow yourself to think that you are inferior, second-class, because you are not! Although there are many groups and people in society that do believe this to be the case, and not necessarily in a hostile way (including many disabled people themselves), they do not constitute all of society! You are part of that society and therefore have every right to participate in it equally. So instead use any anger and frustration that you may feel to take (and fight for, which you will undoubtedly have to do) your place in that society. Try not to think or feel that you are inferior, and do not allow yourself to be treated in the same manner, and you will be pleasantly surprised how things will change for the better.
I am Spinal Muscular Atrophy type II. You may not want me being part of your life, but please don’t spend your life hating me or waiting for me to be eradicated… Because that might just be the biggest waste of your life.
* Not as in a conjoined twin, with the possibility of separation, but in that I will be intertwined in your DNA pretty much forever. There will be a seemingly relentless search for a way of ridding you of me, and although there will be the occasional supposed breakthrough for this goal along the way (thus allowing you to cast aside your “I’ve totally come to terms with this” blanket and once again feel the excitement of potential ‘normality’), please don’t spend your whole life waiting for the cure and hating me!