I commented on The Blogfathers to a post on the active euthanasia debate in the UK. I’m not a huge fan of cross-posting, but I haven’t blogged here ina while, and I cried writing it, so I thought we could all use a little catharsis today. After all- it’s Monday! (PS- please go and see the original post- I know the comments will fly!)
At the same time my mother was pregnant with me, my grandmother (at the time in her forties) became pregnant with my aunt. At her birth, she was mongoloid, mentally retarded, and had a hole between two of the chambers of her heart. She was not expected to live past the age of five, and at a time where institutionalization of the retarded was still a very real option for most families.
She and my grandparents endured surgeries to repair her heart. Her fifth birthday came and went, and she survived. Some in the family believe that what kept my grandfather alive into his seventies was the fact that he felt the need to stay on as long as his heart would allow.
She attended a local school for mentally retarded children. She completed school at age 21 and worked in a workshop designed for adults of her skills and abilities. Eventually, her program was able to place her with Pavion, the cosmetics manufacturer. There she attended company picnics, received many of the gifts and perks that other employees receive, and was a welcome member of the family.
When Pavion closed up manufacturing locally, she moved over to Lederle Laboratories, which has since become American Home Products. They manufacture pharmaceuticals. Her division, which employs many individuals of similar ability, has a supervisor who treats her like a person. He is a firm supervisor who is attentive both to her ability and attention level. She is challenged each day. AHP employs these workers to package introductory kits for your physician, so when they get a promotional box with pens, pads, and samples of the newest meds, there is a good chance my aunt had a hand in putting it together.
She lives in a group home with 13 other individuals. They receive round the clock supervision. She takes her medications and manages much of her own schedule. She exercises each and every day (do you? I don’t!) and helps in the kitchen when it’s her turn. She takes vacations with her house mates, meets pro baseball players, and tomorrow she is taking my family and I to a musical on Broadway.
She is 41 years old, 6 months my senior, and we worry these days whether I will live long enough to continue to look out for her, as she is the youngest of her siblings.
To her, life is productive, meaningful, and worthy of living. How can educated medical professionals even think that ‘active euthanasia’ of infants is worthy of discussion? My local paper featured an article on a pediatric practice that is adding an adult care specialist to their practice because victims of what we call ‘childhood diseases’ such as Cystic Fibrosis are living long past their expected lifespans.
Being a guardian is hard. I know I don’t visit enough, and I’m sure she is lonely at times because her family cannot attend to her needs as well as the experts who care for her. But her home is beautiful and not sterile, and I would guess that if you asked her and she understood the implications, she would not have chosen ‘active euthanasia’.
She is not suffering. She is living. I am not against euthanasia, but it is for those who are no longer living but their body hangs on. There are an extraordinary number of ways to live. It’s not like it was 50 years ago. The iron lung and Willowbrook are not the options available anymore. Who will be the next Stephen Hawking? The next Michael J. Fox? The next Marlee Matlin?
Every person who comes to this world changes it in ways that we can never know. Even if my aunt had lived the 5 years she was promised, she would have changed our lives in a way that would have been invaluable. How else can you explain that my family has been and still are, in some cases: physical therapists(2), occupational therapist, special education teacher, rehabilitation counselor for the deaf, and directors of camps for disabled children(2)?
Every stone tossed in a pond creates a ripple with the potential to become a tide. Who would stand at the shore and catch the stones, deciding which should be cast? I’ll fight that person until I draw my last breath.
