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Philosophy, Psychiatry, & Psychology 10.1 (2003) 81-85



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"What's in the Box Then, Mum?
"—Death, Disability, and Dogma

Sheila Colman


OVERHEARD IN AN EXCHANGE between a bereaved woman and her son outside the church just prior to a funeral service:

"What's in the box, then?"
"Daddy."

The son is in his late 30s and has a learning disability. His mother had prepared him as well as she could; his father had been ill for some time and was not expected to recover. Death, and the rituals surrounding it, had been explained and it was not the first family funeral he had attended.

Trying to field such childlike questions is typical of living with a person with a learning disability; trying to find the right words is difficult enough without the added pressure of personal emotional distress.

The generally accepted norm in life is that a child is parented within the home until adulthood and then independence is attained. Roles may well be reversed in later life in that the "child" may find responsibilities in caring for, and making decisions for, elderly parents. Few people can stop parenting when their offspring are fledged—even though it is at arms length and any advice may be ignored. Life with a child with a learning disability is unbalanced in this respect; as carers we do not lead lives considered to be normal because our children continue to be childlike for the rest of their, and our, lives. Some of us know that our sons and daughters do not have "apparently limitless potential . . . to develop skills and autonomy if only they are given the right help" (but try, as a parent or carer, saying that to a professional working in the field of learning disability!) and know that the best we can hope for is mature, rather than immature, dependence.

No one tells parents of a learning disabled child—or any other, for that matter—what their responsibilities to that child are. Food, warmth, love, support, and so on are givens, but it takes a conscious effort to move a child toward adulthood when it involves changes in life, for example, moving away from the family home. The debate rages; is it letting go or getting rid of?

We all delight in the pleasures our children experience in childhood; we know the magic has gone from the family Christmas once realisation dawns on the youngest child. If you consider that your son or daughter has been dealt a very poor hand in life, the temptation to prolong and promote that innocence is very tempting. It is much easier to prevaricate than to admit that life has its unpleasant sides; that failure and disappointment exist: my son was a great fan of Thomas the Tank engine videos until he was in his early teens, long after it was age appropriate. I passed them onto a younger child, having told him the videos were lost. The fall-out was spectacular [End Page 81] (but fortunately short lived!) and he eventually became very interested in Formula 1 motor racing. I had to push him to grow up.

For all of us, the transition from childhood to adulthood is a process, not an event. Although I agree with the professionals that the child with a learning disability should be part of any discussions concerning his or her future, if that child does not have the intellectual capacity to make informed choices, someone else has to do it. That someone else is usually a parent, but is it a parent who is prepared to let go to help that person become an adult with his or her own life away from the family home, or is it a parent who has protected and coddled the child by promising they will never have to go?

Lest you think I am a particularly hard, confrontational, and unfeeling mother, I would point out that I have almost 50 years of experience of living with learning disability in the immediate family; my son is 20 but my brother...

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