Interviews

Pandemic nightmare

October 3, 2021



What is it like dealing with the medical system during a pandemic for a deaf patient? It’s nearly impossible, incredibly isolating, dehumanizing and truly humiliating. It was a very difficult lesson and I learned quickly who I could rely on for help. I was truly alone for a long time, and had to deal with everything by myself. I still struggle with it on a daily basis and do the best I can under these extraordinary circumstances. 

I had spinal surgery right in the middle of our second and third lock down, and had to make sure that it would be an accessible experience for me. I learned this lesson the hard way over a year ago while navigating the ER and medical/surgical floor at Cambridge Memorial Hospital. I am a regular patient at CMH and Grand River Hospital, many of the staff know me very well. Due to the severity of the pain and complex health issues associated with a spinal fracture, I ended up in both ER’s at CMH and Grand River Hospital 20 times (so far). 

I also discovered how expensive it is to take a taxi to GRH, $60 both ways. As someone who is on a tight budget, that’s a lot of money. I don’t recommend doing that unless it’s absolutely necessary. In my case, it was meant to happen since the ER doctor discovered a serious injury to my left shoulder, a bad tear in the biceps tendon and recommended surgery. The staff at GRH got an iPad for me with a live interpreter via zoom which was a blessing. They loved helping me and worked hard to accommodate me, they treated me with dignity, compassion and kept checking to make sure I was okay. The staff at GRH always treat me like family and they are absolutely phenomenal. 

Anyways…after having so many bad experiences at CMH, I finally reached out to the Patient Relations department who ended up having a brilliant idea. They converted an iPad into a mobile unit for Deaf and Hard of Hearing patients by installing a speech to text program. It took months of getting them used to it and teaching the staff how to utilize it for me. It was a hit and miss with lots of hiccups. Once an ER doctor sees me, especially if it’s one I know, he will get the ipad right away and start using it. I’ve had other doctors write down their questions on a white board, clipboard, etc.. which is deeply appreciated. Now, whenever the paramedics take me to the ER and my name is registered in the system, a notice will pop up informing them to get the iPad to communicate with me. This took a lot of effort and a tremendous amount of work by the Patient Relations department. 

Both hospitals now accommodate patients with disabilities like me, primarily after I reached out to the Patient Relations departments to set up a system prior to my spinal surgery. I learned what worked when I was admitted for two weeks last year after my right leg stopped working due to the severe compression from the bilateral fracture in my lower back. Some doctors were happy to write down their questions, others were not and in fact, two refused to co-operate. As a result of those doctors not willing to accommodate me, this led to more problems down the road and they ended up misdiagnosing me.

Fortunately in my case, I already had a spinal surgeon and slated for surgery a few months later. However, that misdiagnosis had a domino effect on my family doctor. She actually believed that the pain in my back was all in my head and not an actual fracture despite proof on the imaging scans and reports from my surgeon. That’s when I knew I had to de-roster from her clinic. This horrible experience is what led me and the Patient Relations department at both hospitals to make sure that everything was set up properly for my spinal surgery and subsequent follow up appointments afterwards. Now, whenever I have an appointment with any department, I can let them know ahead of time so they can provide a porter for me to help me register and take me to the doctor’s office, X-ray, MRI, or ultrasound. GRH is a big hospital and very well organized, the staff are incredible and they are more than happy to help. Since this system is now in place, I feel more comfortable going to either hospital for more procedures. 

Unfortunately, I have come across a new snag which is mind-boggling. I ended up in the ER in August due to chest pains, most likely referred pain from my shoulder injury (and severe impingement in both shoulders) which is causing muscle spasms in my upper back. Due to my lower back still healing with the bone graft and titanium hardware fusing to my spine, it doesn’t take much to set off a perfect storm of severe pain. That ER doctor referred me to the Cambridge Cardiac Care Centre. That’s when the nightmare started happening. The ER doctor was gracious enough to provide both of my emails to the clinic. They never reached out to me. My brother had to call that clinic to determine what was going on and asked them to email me directly so I could talk to them. They flat out refused, twice, citing that it wasn’t their responsibility to provide an accessible clinic. We were both shocked by their unprofessional and very rude attitude. CMH called them on my behalf and were told they would send me an email. They did but it was strictly one-way which was a list of my upcoming appointments. It was an automated message that I could not reply to. I had no way of contacting them.  At the bottom of the message, there was a note that said to call them to book or cancel appointments, and to call them a week prior to confirm which I could not do. I had no choice but to contact the CPSO which clearly state that doctors are to treat disabled patients with dignity and compassion, and to provide an accessible environment so they can have access to the same services as everyone else. 

The CPSO intervened on my behalf and started a conversation with the cardiac clinic. They refused at every step to help me, would not allow me to communicate with the staff via email, would not provide an iPad or any other tools to help me understand speech, and they insisted on yelling out commands with a face mask on which would defeat the purpose. The clinic resisted every suggestion that we made to help me. I had an appointment this week which I couldn't go to since I have to make a phone call to answer their COVID questions which I cannot do. They have created so many barriers and have deliberately refused to treat me with any resemblance of compassion, that I literally cannot get into the building to see my cardiologist. Despite the fact that CPSO, a provincial organization that oversees doctors in Ontario, tried to educate the this clinic on being more accessible and accommodating to patients with disabilities, they still refused to make any changes and in fact, turned me away from an essential medical service that I need. 

This is not okay. I am extremely independent and live alone. I do the best I can with what I have, and will continue to educate others and advocate for more inclusive doctors, hospitals, and medical clinics. It’s exhausting work, especially while in pain and recovering from major spinal surgery. There are days when it gets so frustrating that I feel useless and not worthy. It’s hard, especially since I respect a lot of the medical staff, doctors and surgeons. Yet, I am often cast aside like a forgotten toy. 

I am still an athlete, still striving towards my goal of my fifth black belt next year when I get permission to train and teach again. I may not be able to do much due to my physical limitations at the moment,  I still try to be positive and upbeat, cheering on others. But in my heart, I feel invisible. The connection I had with the community seems to be gone. 

It has a been a long, long year for many of us due to the pandemic which has created even more obstacles for those of us who are Hard of Hearing or deaf. It has been tremendously draining for people like me who continue to fight for my rights as a patient with a disability. I am still on the waiting list for a family doctor, and cannot even see a cardiologist due to their inaccessible clinic. COVID has not only placed a heavy burden on the medical system, it has created more barriers for patients with disabilities and prevented access to services that we desperately need. It takes a lot of work, teamwork between the patient and the hospital to ensure that I am not forgotten or neglected anymore. Yet it still feels like my voice is not being heard and I’m still invisible. 

Links to guidelines and laws:

There are numerous laws in place to "protect" patients and people with disabilities such as the Accessibility for Persons with Disabilities, which is clearly listed on the CPSO website: https://www.cpso.on.ca/About/Privacy,-Accessibility-Human-Rights-Codes/Accessibility-Policy 

Essential services in Ontario are required to be accessible to everyone regardless of their disability and show the proper respect for human rights, including the Ontario Human Rights Code which states that everyone deserves to be treated equally without discrimination. 

According to the Ontario Human Rights Commission (http://www.ohrc.on.ca/en/discrimination- based-disability-and-duty-accommodate-information-service-providers):

  "Under the Code, service providers have a duty to accommodate the needs of people with disabilities to the point of undue hardship, to make sure they have equal opportunities, equal access and can enjoy equal benefits. The goal of accommodation is to allow people to equally benefit from and take part in services. The Ontarians with Disabilities Act clearly states that hospitals, clinics and public service organizations, must provide service in an accessible manner: “You must receive service in a way that respects your dignity and independence as a person with a disability. You must have an equal chance like others to get, use and benefit from services.”   
 

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