The following is an opinion piece that I wrote for Autism Daily Newscast on Nov. 5
Nancy Fitzmaurice - As a mother to a young son on the autism spectrum I have found this opinion piece extremely difficult to write. However, I believe that we have to share the opinions that have been aired about the euthanasia of this little girl.
Last week I read about the High Court's decision to allow Charlotte Fitzmaurice, the mother of Nancy Fitzmaurice, to end the life of her severely disabled daughter aged only 12 years.
The Metro reported that Charlotte Fitzmauricethe had given up work to care for her daughter full time, who required round the clock hospital care. Nancy was unable to talk, walk or even eat and drink and had been born blind. Medications, fluids and nutrition were administered via tube feeding. The case made legal history as it was the first time that a child not on life support and not suffering from a terminal illness, was allowed to die. Great Ormand Street Hospital fought alongside Charlotte in her decision to end her daughter's life. She died in hospital on Oct. 21.
In a statement Charlotte told:
'My daughter is no longer my daughter she is now merely just a shell,'
Further adding:
'The light from her eyes is now gone and is replaced with fear and a longing to be peace.'
Since the release of this story the autism advocacy group, The Autistic Self Advocacy Network (ASAN) released a statement on their website, Oct. 28. regarding the decision that was made to terminate Nancy's life. They expressed their deep concern that a child who was not on life support, but who was able to breathe independently, had been "killed by the medical system."
They state:
"Euthanasia of people with disabilities is an extremely dangerous and wholly inappropriate solution to inadequate pain management. In cases where painkillers are insufficient, a number of alternatives for pain management exist. A policy of euthanasia targets vulnerable people, particularly when it is applied to children. People with disabilities who experience chronic pain should have same access as others to life-sustaining medical treatment."
They go on to further add that when doctors and parents authorize the killing of a disabled child that this is when serious abuses occur.
They then further add:
"The media coverage surrounding this case has been extraordinarily irresponsible, implying that the child's disability should justify a decision that her life was unworthy of living. ASAN is concerned that the voices of people with disabilities with similar support needs were not heard in this discussion. Many people with disabilities who utilize feeding tubes or experience other conditions similar to those Nancy Fitzmaurice face live in the community and do not feel that their lives are not worth living. The absence of the voices of people with disabilities who could shed light on the lived experiences of children like Nancy is troubling in the extreme."
An opinion piece posted by Cassy Fiano Oct. 3o on the Live Action News website agrees with the statement made by ASAN, telling that
"ASAN hits the nail on the head, and especially so by calling out the media coverage of this story, which has been overwhelmingly positive."
The writer further adds:
"Charlotte Fitzmaurice Wise is portrayed as a loving, devoted, selfless, noble mother for making the decision to kill her daughter, because any child that severely disabled should obviously be put down, like a dog."
So did the High Court make the right decision? I have to put myself in the shoes of this mother, how would I feel if my son were suffering in this way? What would I do? Hand on heart I honestly don't know. I would not want him to suffer unbearable pain but would I be able to tell the doctors to withhold treatment, so as to end his life?
My son is able to walk and talk, he can see, he has a good quality of life, so for me to judge this mother and to condemn her for what she has done, well, I just cannot bring myself do that. None of us would want our children to suffer in this way and I believe that she deserves my respect and empathy. I am not in a position to judge her.
One important question to consider though is the one put across by Cassy Fiano.
"What is dangerous about Nancy Fitzmaurice's case is that it sets a horrific legal precedent. Now, can any parent go to court and claim that their disabled child is "suffering" and that it would be kinder to just kill them?
People with disabilities will be seen as burdens and drains on society, if the mindset that citizens must be productive in order to be of value takes hold. This obviously robs people of their inherent value, worth, and dignity."
Has this case now set a precedent for the legal abuse of disabled children? That I feel is the million dollar question and one for a raging ethics debate that will no doubt continue.