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.
Amy, this is so important and such a terrific post. Thank you for writing about your experience so that others can read and (hopefully) learn why policy like this one must be changed and not just in this hospital, but in ALL hospitals and places where “policy” causes some to suffer. <3
I wonder whether using a One Page Profile might have helped the hospital listen to you better Amy. This blog has many examples of how people have used One Page Profiles to make hospital visits safer and easier. The stories and examples most relevant to your story here will be found by scrolling to near the bottom: http://onepageprofiles.wordpress.com/tag/hospital/
I am so proud of you, Amy, for the way you’ve handled this, while letting everyone know that this is not okay. All you needed was a friend. I hope I can stand by you as a friend for a long time. <3
Amy I totally agree about having someone in recovery. When I had surgery and then complications and another surgery both times the hospital said nobody could come to recovery area. But then both times things did not go as planned and the hospital staff went looking for someone and thus my friend got in that way and could tell what I needed. I look very compromised in medical situations. Then, my friends set up a schedule for round the clock that someone could stay with me. My doctor told the hospital not to put anyone in the bed next to me so my room was more like private. I think our lives can be jeopordized when someone who knows us cannot be with us. An apology after the fact seems quite shallow when it could have meant our lives. I am so glad you are back to typing again and to read this post.
A friend of mine on the autism spectrum was in hospital and the OT willfully ignored her history and her own experience. Assessing her as if from square one. This is very distressing.
My goodness, this kind of thing makes my blood boil. I hope real, lasting change does come out of this. But really, you never ought to have been put in that kind of situation to begin with.
Amy, thanks for telling us. I am passing your article on to someone who might actually be able to do something to change the system. I am glad you brought this up.
Thank you for sharing, Amy. I send you my affection and support.
Thank you for sharing your story and advocating for much needed changes! As a parent of a child with communication struggles I worry about this as well!
Thank you for sharing your story and advocating for much needed changes! As a parent of a child with communication struggles I worry about this as well!
Amy thank you for sharing your experience about your hospital stay. I have quite bad experiences when hospitalized. Your post reminds me I need to more prep and communication in the future. Thank you.