Ian Shaw, a 35-year-old disabled British male, is recovering nicely from testicular cancer. He’s fortunate; if Dr. Justin Wilson hadn’t stepped into his case, ableism within Britain’s National Health System might have prevented Shaw from getting chemotherapy.
Image Description: “Ableism” written in white block letters on a brick wall.
Content Note: Ableism, cancer, child death, euthanasia, medical model of disability, organ donation, parent killing child with disability
Ian Shaw is autistic, intellectually disabled, and doesn’t communicate using words. He has epilepsy. He’s spent most of the last decade in secure units because he has behaviours that are difficult to manage, but his parents fought to get him moved into a community residential setting, and eventually got him a placement.
A few months after moving, he was diagnosed with advanced testicular cancer. Shaw’s family blame the staff at his previous placement that the cancer was not detected sooner – he’d apparently had a testicular swelling treated the year before, but no follow-up had been done.
Ian Shaw received his cancer diagnosis in December 2016. By February 2017, the tumor had grown so large that it was affecting Shaw’s spine, making him unable to walk. Doctors at Luton and Dunstable hospital said that, given the rapid downturn in his condition, they wouldn’t be able to start the planned chemotherapy treatments, and declared his condition terminal. Shaw went to live with his family and receive palliative care in their home.
Enter Dr. Wilson, a psychiatrist who has studied cancer treatment in intellectually disabled people.
Ableism in Ian Shaw’s Treatment
Knowing that testicular cancer is very treatable with a high rate of success, the story puzzled Wilson. Statistics support his position:
“For men with cancer that has spread to the lymph nodes in the back of the abdomen, called the retroperitoneal lymph nodes, the survival rate is about 96%. But, this depends on the size of the lymph nodes with cancer. For men with cancer that has spread outside the testicles to areas beyond the retroperitoneal lymph nodes, the survival rate is 73%. About 11% of testicular cancer is diagnosed at this stage.”
Given that Ian Shaw’s tumor was affecting his spine, even if we assume that the survival rate was even 60%, why the assumption that there was no point in trying a course of chemotherapy for a cancer that statistics show does respond readily to it?
“My concern was that perhaps judgements were made about the quality of life that he has because of his severe learning disabilities and because of the physical impact of how the cancer has spread,”
He was also concerned that the challenges of administering chemotherapy to someone with Ian Shaw’s behavioural challenges were making the hospital reluctant to offer treatment. He requested to be put in touch in with the family, who got a second opinion about treatment for Shaw after talking with him.
The University Hospital Trust for Luton and Dunstable Hospital said that Ian Shaw’s disabilities weren’t a factor in the decision to put him on palliative care, but the proof seems to be in the pudding on this one:
- Shaw is receiving chemotherapy at the Royal Marsden Hospital – he is put under anesthetic while it happens. Not a perfect solution, but it allows it to happen
- The tumor is shrinking – Shaw now uses a wheelchair
- A young man who had been told he was going to die within months has hope
If Ian Shaw was indeed refused treatment initially because of his disabilities, it was because of this medical model of disabilities that tries to tell us that “quality of life”,”quality of contribution to family/community/country”, and “quality of relationships” need to fall within narrowly-defined, highly subjective parameters in order to be “valid”. It’s a way of looking at people, community, relationships, and the world that it seems like we should have grown out of by now, quite frankly.
The Importance of Confronting Ableism
It’s not just Britain. We know that disability affects whether or not someone gets an organ donated to them in America, and whether people are granted permanent residency in Canada. We know that it was also in Britain where the courts gave a hospital permission to kill Nancy Fitzmaurice, who didn’t have a terminal illness and who was breathing on her own with no life support; she was twelve years old.
Any person could become disabled at any time. It’s important for all disabled people to know that these ableist attitudes exist within our systems, so that they can be prepared to fight them if they have to, especially when they’re dealing with agents of systems (medical system, legal system, judicial system, etc.)
Ableism kills. We must never become complacent.