Disabling

A lot has happened in one weekend that stirred me to write a blog. I have been processing all morning of what has happened in the last few days.

My daughter had an irritation on her face then on Friday it became an itchy crusty rash. I had tried to reach our family doctor to see her all day, but decided to take her to urgent care at Hotel Dieu Hospital in the late afternoon. Understandably we didn’t see a doctor until 4 hours later. I did not request an interpreter, knowing it would be a long wait and only short conversations at times so I used an Otter app that translates voice to text. It’s not perfect, it’s a temporary fix and the doctor would repeat if the text seemed odd. When we saw the doctor, he stood a distance back and took down his mask for me to lipread, which was challenging for me as he spoke words I do not recognize. Despite me trying to lipread, I continued to use Otter. He was communicating with my daughter who is 16 years old, old enough to describe her struggles. I had the privilege to use my voice when needed, I didn’t perfectly pronounce things right but the doctor got the gist. I trusted my daughter to answer questions directly. He diagnosed her with a skin condition and prescribed her meds. We were free to go home. She was given her meds and sent to bed. 

In the early morning before sunrise, she woke me to show her face had ballooned up. I decided to return her to urgent care and again we waited another 3 hours before seeing a doctor. Using Otter and understandably this different doctor refused to take her mask off, I accepted that. We got by while my daughter filled in the gap when Otter didn’t make sense. She can hear perfectly fine and signs well. We were sent home with a new prescription to use.

Hours go by and we think the new meds were helping until Sunday afternoon, she was struggling to see when her skin was getting puffier around her eyes that she was getting clumsy. Itchiness was rampant and nothing was soothing her. Concerned once again and decided to take her to Kingston General Hospital. 

I had my Notes on my phone ready with all the information that has happened in the last two days even though they have the information on file with her OHIP. Receptionist upon arrival signed a bit, asked if my daughter was ‘hearing’. Asked to confirm ‘phone number’, address information etc. Directed us to wait in the waiting room. It was packed, I was standing at one point so I didn’t take patients’ seats. We arrived at 8:30pm. We didn’t see a doctor until 2am. 
When we got into the room, a registered nurse asked if there was anything they could do for ME. She recognized I am Deaf and knows the policy of providing access. I explained I am using the Otter app and will use it that night. We were visited by resident doctors after another and then finally at 3:30am their senior doctor on staff. All concerned with her well being. Her skin condition stunned them because she was not exposed to anything, allergic to anything and was not in pain. It was decided then they will admit her. We didn’t get a room until 4:30am. 

My Otter app has decided at that point to quit on me. I may have maxed out the free available minutes. I got by with the nurse on staff on the 10th floor gesturing and my daughter filling in. It’s not my daughter’s responsibility and I don’t depend on her normally. But she put her hands up despite it all. She had her temperature and blood pressure checked, all good. Then we slept, with me on a chair cot (surprisingly comfortable) next to her. I moved the cot closer to her so I could feel her movement if anyone entered the room. I don’t have a dog to alert me, he’s not a hearing dog but his bark vibrates me. The sun has risen and we can see Lake Ontario from our room. I only had 2 hours of sleep, and learned the nurse was in the room at one point checking on my daughter. We didn’t see the rotation staff for another hour and half, I was constantly opening and closing my eyes every 15 minutes so I didn’t miss anything and kept an eye on my daughter.

The new nurse checked her vials, blood pressure, temperature and asked questions. Fortunately the Otter app worked then. I knew then I needed an interpreter for the rest of the day, as doctors and specialists will be visiting her asking many questions or providing answers I didn’t want to miss out on. I have been battling with uveitis, blurred vision for the last 4 weeks starting with my left eye and then my right. My iris was stuck to my lens, and currently my right eye is almost free from the lens. Clear communication was a MUST. 

I sent an email to urgent interpreting services at CHS and requested the doctor who visited first to contact CHS to approve sending an interpreter. I guess she didn’t, was busy making rounds on the floor and CHS couldn’t make it happen without their approval. I had to remind the floor doctor to call CHS. I was frustrated.

You know as an abled hearing person, you can go in and get the services easily while Deaf people have to advocate on top of their trauma and fight to get access. It’s messed up! I researched today that Kingston General Hospital has two different hospital policies while other hospitals have one and provide accessibility instantly. Some staff are aware about access, while others don’t due to different departments likely not taking inclusive communication training. Then in any hospital we have management deciding if we can get our access. It’s damning ignorance on their parts. I know that the west of Ontario’s hospital flat out denies access. Deaf people have been around forever and always needing access. Not every Deaf person is a strong advocate and accepts the treatments they are given. There need to be standard practice in ALL hospitals to provide access to interpreters instantly, even though one was not requested. It’s a liability concern! There are thousands of complaints across Canada about this. Even death was caused without interpreters present. 

I fortunately had direct contact with the local interpreter to show up, be on standby. I had to advocate to make the connection all around to keep the interpreter present. The nurse called and all was good moving forward. But I was still advocating, still teaching them the best practice. I should be focusing on my daughter and not teaching.
We saw doctors, specialists and had her bloodwork done as well as a skin test. It was decided she didn’t have what the first doctor diagnosed and needed one medicine only to rid of all the cocktails that disrupted her skin badly and ballooned up her face. She was released to go home. She is recovering well today, still it will take time for her face to look like herself and get rid of all rashes on her body.

Did you know that Disability Pride is celebrated this month but not in Canada, yet many celebrate it anyways. It started in the United States in 1990 has become a global movement of empowerment and visibility for those with disabilities.
Disabilities may be visible, like someone with a wheelchair, wearing a hearing aid or with a service animal, but they can be invisible as well.  

I am considered invisible, I do not wear hearing aids. I am Deaf, disabled from a auditory society. I communicate in American Sign Language, that’s not a disability as it’s a language like English. 

Society’s view on Deaf and disabled people is heavily misguided, that we are a burden to their tax dollars and fraught with needing ‘special’ treatments. Honestly it’s the other way around, if responsibilities are shared by accommodating, it wouldn’t be taxing. The system is so old and needs to be reframed. People’s view of Deaf and disabled people succeeding in life isn’t inspirational, it’s literally just what happens if you give them a fair chance and accessibility (Naomi Smart). You’re not doing us a favour when we make requests. It should be necessary to make it happen.

I have accommodated my whole life by adjusting my communication approach if the individuals I meet do not know sign language. When one doesn’t want to meet me part of the way, they are disabling me. It’s frustrating. Yes I’ve been told constantly technology is great, but it’s limiting. People truly need to listen to disabled voices as we know what we need!

It’s easy for anyone to say ‘it’s not my child, or community, or world, or problem’. But it is… it will be one day whether it happens to them or to their loved ones. Choosing not to be part of the process to improve or provide accommodations when it doesn’t affect them, dismisses the rest of us. It’s also as I wrote earlier, a liability issue. 

I strongly advise you to be educated and be mindful of both visible and invisible disabilities. Don’t dismiss our needs, you end up disabling us. I have encountered people who end up apologizing afterwards when it hits them, yet I still supported them. They didn’t know but would have an easier life if they listened in the first place and provided access they needed now. 

Bring on Deaf and disabled people at your table. We can make a difference together. Take pride in progress meeting people’s needs.

Edit to add: People wondering where my husband was since he’s hearing and could have taken care of this. First, I am very capable and her mother! Second, he was out of town when my daughter and I started the path with the hospital on Friday. My daughter, despite my deafness, knows I can advocate for her and get the help the medical help she needs.