Friday, August 23, 2013

Where does value lie?

The following is a segment taken from an email exchange carried out between The U.K. Guardian and Ashley X's parents in March of 2012.

We believe that the main value that Ashley's life has is in the context of being part of her family and her family's love, so we feel strongly about her continuing to be an integral part of our family.(emphasis mine)

     Ashley X's parents follow up this line of thinking with the unproven notion that keeping "Pillow Angels" small will keep them from being sent off to institutions, and kept in the family for a longer time.
     There are many things about growth attenuation that I can find fault with. It's easy to do. At the most basic level though, it is the perception of people with disabilities as somehow having to suffer through a checklist assessment of their place on the scale of humanity--as if there is one--that I find most objectionable. People with disabilities are always left to prove their worth, even their humanity, based on assessments made by "standard human type A", the walking, talking, right thinking, money making, socially acceptable homo sapiens. Deviation from the mean is deadly, in some cases.

And so to Ashley X's parents I say this: I have a typical daughter as well as one with severe disabilities. I do not find that "the main value" of her life lies strictly in the context of family life. Now, as a young adult of 22, she is on her own, trying her wings, living in her own little place with her own first "real" job. It is for her to move away from the family and be her own person, carve out her own place in life, find new relationships. Her life has value because she has life. She doesn't need to prove that to anyone.

The same is true for my daughter with severe physical and intellectual disabilities. She may always need support, here at home with me or in some sort of placement outside of my home, but her life has value. Period. She deserves to be seen as a person carving out her own place in life too. Her dependence does not make her a non-person, whose only value is based on the assessment of others around her. She is not a burdensome adjunct to my life or to life of her caregivers. She has a place. She has a mind, however compromised. She has ability, however subtle. I honour that. I expect and teach others to honour that too.

Sophie is real. She is a real, live person. She is a force to be reckoned with. She is not, nor ever will be anyone's Pillow Angel. 


  1. I'd put quotes around this entire piece and make a giant Shepard Fairy-like mural and paint it everywhere that people could see it -- if I could. In lieu of that, though, I'll share it with many.

  2. I'm thinking that Ashely's parents want all their children to remain "small" so that they may continue to control them. I have a full grown severely disabled daughter who is a handful but I would much rather she be a handful than a "pillow angel". My daughter has a big personality and big behavioral problems as well but she is herself. She is a human being, not my doll, not my baby. She is a person.

    1. Hi Lily. Thanks for your comment. I think control is involved, but not for behavioural issues. I think some people are afraid of their severely disabled children growing up because they cannot imagine caring for a full grown adult body. I think it might even disgust them. So they keep their children small forever because it's all they can deal with psychologically. This seems particularly the case with Ashley, because the parents sought counsel when she showed signs of early development (not unusual in this population).

      On a side note, I have a tremendous amount of respect for you parents who deal with children who have significant behavioural issues. It requires a lot of emotional strength. Hats off to you.