I stood there, in my underwear.
They were pale blue, with small flowers on them. I remember it very clearly – mostly because there were four men in the room who I had never met before. They were looking at my body, and my mother wore a worried expression.
The tallest man touched me.
“You see, here and here,” he said. His hands were warm. The other men were looking at my body, and none of them looked at my eyes.
“You can get dressed now, dear,” he finally said, and I scrambled to put on my clothes.
I was four.
I was not sure why that memory has always stayed with me, nor why it was a traumatic one. There was no suggestion of sexual impropriety – these men were doctors. Nobody ever acted inappropriately. It was not until the first time I looked at a medical image of a young girl with a disability that I blenched. A young girl in her underpants, facing the camera without a smile on her face. The image was posted online and I immediately recoiled. So did other women with a disability.
My disability is degenerative – I had limited intervention until later in life. But can you imagine the psychological trauma experienced by those now-adults who were routinely measured, prodded, photographed and inspected every month of their childhood?
In her scathing account about ‘public stripping’, Lisa Blumberg talks about this crude practice. Privacy in medical examinations may be the norm for ordinary persons, she says, but they’re not the norm for disabled people – and particularly not for disabled children. Doctors at hospital and clinics which specialise in paediatric conditions such as spina bifida, cerebral palsy, muscular dystrophy and brittle bone disease have traditionally displayed their patients in front of colleagues, residents, therapists and students. Public stripping is a degrading practice that has a lasting psychological impact on adults today.
Strap these to your feet, he said. They were sandbags, fashioned into clumsy calico bags that my mother could strap to my ballet shoes.
“They’ll strengthen your legs,” he said, and dutifully I went to my ballet classes – plie, plie, demi plie. Amongst all the other little girls in pink tulle, my feet weighed me down and I shuffled around the room. At the doctor’s, more public stripping, and a delighted inspection of my legs, hips and feet.
“I think she’s getting stronger,” he said at last, and my mother sent me back to ballet classes. Eventually, I refused to go.
“But you love ballet!” she exclaimed, and I did not have the words to tell her that ballet was now indelibly intertwined with doctors, pain and public stripping – with shame, embarrassment and a sure knowledge, instilled with a deft hand, that I was broken forever.
At a recent disability rights conference, Blumberg says, a 30 year old woman with spina bifida described her medical experiences in a voice shaking with pain and anger. All through childhood and adolescence, Anne told the group, the semi-annual orthopaedic examinations her doctors required her to have took place in a large hospital room, with 20 or more doctors, residents and physical therapists looking on. During the sessions, Anne was permitted only to wear underpants.
No one ever explained to Anne why she had to be examined in front of a group. No one ever considered whether she found it embarrassing or upsetting to be viewed nearly naked by so many people. No one ever acknowledged to her that she was being used as a teaching tool. No one ever told her or her parents that she had any choice in the matter.
What the medical profession does not understand, argues Blumberg, is that disabled people who seek medical advice are like anyone else seeking such advice. By and large, we want to be provided WITH a medical service, not to render one.
As an adult, I have an aversion to physicians. I can barely scrape up enough courage to attend for an annual medical examination – after a childhood filled with adult stripping and teenaged years filled with muscle biopsies and needle electromyograms, I am sufficiently traumatised to avoid any doctor, often to the exclusion of good general health. It is difficult for me to go into a doctor’s surgery without reimagining the worried look in my mother’s eyes or the doctor’s dispassionate tone. The smell of antiseptic or bleach makes my heart race still.
As disabled people, we are routinely discriminated against by the medical profession. We do not have access to regular medical facilities because of lack of accessible facilities or equipment – we are routinely denied basic treatment because we are ‘difficult’, not shaped or created in the same way that others are. We are killed at an alarming rate – we are ‘let go’ rather than resuscitated because of the opinion of the medical profession about our quality of life, in the name of mercy killing. The phrases ‘she’s not suffering any more’ or ‘he’s free now’, are sentiments regularly stated at the funerals of disabled people. We’re killed even before we’re born, in the womb, a staggering 90% of foetuses diagnosed with Down syndrome terminated on the basis of their difference. We are sterilised without our consent and have routine medical procedures carried out without our informed consent.
‘All the ladies in the group home go and get the shot every month,’ a woman living in a group home told my friend. Depo-Provera suppresses menstruation in many women, despite carrying side effects. Few of the women in the group home are sexually active, but menstruation is a messy business. None of the women were given any information about the side effects or about using other forms of contraception. It goes on every day, this casual breach of our rights in medical settings.
There’s a prevailing myth that people with disability should be ‘dealt with’ by the medical profession, and that leads to the belief that ‘doctor knows best’. People with disability certainly need access to good medical care. But why should that be at the expense of our dignity, our privacy and most of all, our basic human rights?
The next time I take my clothes off in front of a group of men, I expect them to throw money at me. As a middle aged disabled woman who isn’t prone to frequenting strip clubs, I don’t expect that to happen often.
You can read Lisa Blumberg’s account about ‘Public Stripping’ here.