Being Disabled and in the Hospital

Green square with white handwritten font "Being Disabled & In the Hospital" underneath this in smaller font "Amy Sequenzia" in bottom right hand corner "ollibean".

I recently had surgery, something that was supposed to be quick and simple, but complications turned my one planned night in the hospital into nearly one week.

 

The surgery was planned, I had a chance to choose the doctor and prepare my instructions and concerns before the first appointment – sometimes, during appointments, I am unable to type, because of seizures or overwhelm.

 

The choice was a good one. The doctor was respectful and, even before I asked, he suggested that my friend be in the recovery room when I woke up. She knows me well and would be able to understand any communication method available to me waking up from anesthesia.

 

Everyone in the surgery area agreed but when it was time for my friend to come, she was not allowed to be with me. The worst is that she and my dad were scared and worried because of what had happened in the OR. I did not yet know about the events, but I started to wake up and I was alone, in pain and my friend’s comforting presence was denied to me. I needed her there because she would be able to “read” me and explain what was going on.

 

It took a long time for me to go to my room and finally see my family and my friend. I was tired, confused and angry. I was silenced.

 

The hospital administrators apologized, saying that we should not have been told that I would have my friend in the recovery room with me. It is not their policy and they don’t have a more private area for this.

 

To which I say: time to change the policies. I communicate in ways that most people still don’t understand. Other people have different ways of communicating. Unless hospitals have trained health care providers who can communicate with everyone, they need to find a way to accommodate our needs. Waking up from anesthesia after surgery is confusing and we all need to be able to convey how we feel. I wasn’t, and what happened to me was the same as not allowing a speaking person to say anything by covering their mouths.

 

It is sad that the bureaucratic side of the hospital still cannot accommodate disabled people’s needs. The doctors and nurses did not see a problem. I am pleased to say that most of them looked past my appearance and needs and treated me with respect, talked to me as they would have to any other adult.

They never looked at me and assumed I wasn’t in pain just because my face does not always show how I feel; most of them presumed my competence and I even had time to do some activism by directing them to my blog posts where I write about how important it is to listen to us, disabled people, instead of organizations that claim expertise on us. I wasn’t able to type much, but they understood that too.

 

In many ways, I was lucky. My life was not devalued, like it happens to so many disabled people; doctors talked to me, even though it seemed like I wasn’t listening; nurses and assistants were respectful and treated me like an adult (most of them). There are so many things that need to be changed in the way disabled people are treated in hospitals, I was afraid I would be just another case.

 

That wasn’t enough though. The apologies were an afterthought, something the administrators did because they saw the mess the miscommunication caused. But they still need to change their policies. They need to see that our needs are as important as anyone else’s. We cannot change who we are, policies can. All I needed was a friend with me when I woke up. I would be assured that things were ok, that if I needed something I would be able to communicate that.

 

Instead, I was alone, confused and afraid.

Image description black and white photograph of woman with short dark brown hair. She is smiling. Dark grey text reads:Amy Sequenzia Passionate Autistic activist, writer, and poet . Read more from Amy on Ollibean and visit nonspeakingautisticspeaking.blogspot.com .

About the Author:

Amy Sequenzia is a non-speaking Autistic, multiply disabled activist and writer. Amy writes about disability rights, civil rights and human rights. She also writes poetry. Amy has presented in several conferences in the US and abroad, and her work is featured in books about being Autistic and Disabled. Amy is deeply involved with the Neurodiversity Movement and has been outspoken about the rights and worthy of disabled people. Amy serves on the Board of Directors of the Autistic Self Advocacy Network (ASAN), and the Florida Alliance for Assistive Services and Technology (FAAST). http://nonspeakingautisticspeaking.blogspot.com and Autism Women’s Network. You can also follow Amy on Twitter at @AmySequenzia.

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