One story about the challenges of healthcare for women with disabilities.
Last year, I found a lump in my breast through self-examination, I feared the “what if?”. At first, I assumed it was a hormonal lump which I have had before, but as my mother had breast cancer, my doctor wanted me to get a mammogram and an ultrasound just to be safe.
My name is Asha. I’m a forty-five-year-old disabled woman, and this is part one of the challenges I experienced trying to schedule my first mammogram.
My friend mentioned to me that that I can book a mammogram at Myer.
“Myer? Myer, My store?”
I decided to check it out. After visiting BreastScreen NSW’s website, I booked my appointment at Penrith Myer as it was the earliest to book a screening and it was nearby to where I live. It said on their website that some locations were wheelchair accessible. I emailed and rang to say that I am in a wheelchair to make sure.
A couple of weeks later it was time for my mammogram. “Sorry Asha,” the radiologist said. “We weren’t ready for someone in a wheelchair as we didn’t know”. I pursed my lips, sighed and slightly shook my head “I did ring”, I said.
I sat awkwardly and faced the clunky machine in my powerchair. My arms were wrapped around it tightly and the clamp on the machine had pressed my left breast hard down and flat.
“Just hold still, Asha!” the radiologist shouted, as they all ran out of the room.
I had hoped that the mammogram machine was more disabled-friendly, but it wasn’t.
My eyes closed.
Oh my god, just hurry up and take the scans, I thought.
I heard a click, and the machine immediately and automatically unclamped me.
Ahh relief!
It took five seconds and it wasn’t sore, just uncomfortable.
Left side done, now my right.
I reversed my power chair away from the machine, I moved a little to my right and drove towards the clamp on the machine. It took a few times to move my powerchair back and forth trying to get into the right position.
As this was happening, I heard the radiologist mumbling, and she looked irritated, “Can this wheelchair go in manual so I can push her?”, she said.
“It’s hard to push a powerchair on carpet’, I said.
But, as per her request (and to prove my point) I put my wheelchair in manual mode, and I felt her struggle to push me on the carpet. She commented about her lower back.
Annoyed and frustrated she said, “This won’t work! She needs to go to the hospital because they can hoist her in a manual wheelchair, we don’t have the right equipment”.
The radiologist’s assistant said, that I was nearly in a good position, and we should try again, however the radiologist said no.
That was a dampener, because all I needed was patience. I managed to get a scan done on my left side – it didn’t make any sense to me.
“There’s Westmead Hospital. But you don’t wanna [sic] drive all the way over there,” the radiologist said.
I firmly said to her, “If that’s my only option to get a mammogram done – then yes, I will go there as this is important for me and I have to do it!”. In that moment, I felt like I didn’t matter, like my health didn’t matter?
1 in 7 women in Australia develops breast cancer, a fact that I didn’t want to be a part of.
I left the clinic and noted that there were six women waiting. My unsuccessful breast screen had taken forty-five minutes.
I concluded that perhaps the radiologist was on a time limit. If they had known that I was in a wheelchair maybe they would have allocated more time to me?
A few weeks later, my next attempt for a screening was at Westmead Breast Cancer Institute.
My carer and I caught a wheelchair accessible taxi to the appointment. I was dressed in a hospital gown and I was back awkwardly cuddling the clunky machine again.
This time, the radiologist and her assistant were very accommodating and patient with me. I did all the angles in my power wheelchair as best as I could, and I didn’t need to be hoisted in a manual wheelchair at all. At one point, I had to twist my body at the waist which was tricky, my carer had to stuff my clothes on my side to hold me steady for the scan.
The appointment took an hour, and I left really satisfied knowing they got all the scans that they needed.
However, a week later, I received a phone call from Westmead asking me to do the mammogram again, and this time an ultrasound. Maybe the scans weren’t clear? There were a couple of angles they wanted last time, that were a struggle to hold steady.
I kept thinking about all the time, effort and the frustrations that I went through since my very first unsuccessful breast screen in Penrith.
It raises the question for BreastScreen NSW: Are women like me welcome at their clinics to do mammograms?
Words by Asha Prasad
Note: This is part one of Asha’s story. If you have been in a similar situation and would like to share your story please fill out our Contact Us form.
