by Jolean O’Connell
From the Editor: As an organization we are very proud that we represent all blind people and that blind people are a cross-section of those who make up the world. The difficulty has always come when we get to decisions about what we can and should do for blind rights when there are other issues that complicate things. In the case of mental illness, we have tended to defer to those who work with the mentally ill for two reasons: we have regarded the professionals who work with the mentally ill as experts and have been very aware of our lack of expertise when it comes to understanding the meaning of a diagnosis and how to react to it. It is a bit humorous to think about the latitude we have given to professionals in this field, given the difficulty we have at times faced with those who believe they know more about blindness than we do. Every analogy breaks down, of course, and I think many of us are still very unclear about what decision-making faculties are compromised by mental illness and which are simply deemed as prerogatives by the professionals. Again, we have little knowledge of how to run institutions and have been hesitant to assert what we do not know. All of this has sometimes meant that we may have overlooked fundamental human rights or not given them the priority they deserve simply because figuring them out and then asserting them is more difficult than in cases that don’t involve institutionalization.
Jolean O’Connell is making her first appearance in the Braille Monitor with this article. I hope many of us will be informed by what she says, seriously consider her experiences and recommendations, and figure out a way to assert the rights of blind people that should help to make all of us happier, more functional human beings. Here is what Jolean says:
Greetings, all. In my nineteen years of life, I have been admitted to psychiatric hospitals a total of eight times. I come to you with my experiences of inaccessibility and to talk with you about the way the lack of education about blindness on the part of hospital staff gets in the way of quality care. I want to make clear the ways we can address these injustices and implement positive changes in facilities that deal with people who are undergoing mental health issues.
I became a cane and Braille user at the age of four, so you can imagine how vital these two things are to my life. They are almost more than tools—they are a part of me.
More often than not, those of us who are nonviolent by nature are integrated with those who are rather aggressive. This poses many issues affecting my having and using my books and canes. The problem with hardcover books is because of the spines that can be broken and used as weapons against others or oneself. The same is true with the canes that can easily be used as weapons.
For the first six times I was hospitalized, the keeping of my books and canes was not a big issue. Those problems began my seventh and eighth visits. I’ll start with the seventh. I could not get access to books, because I was too far away from a location in which Braille books were stored, and it would have been quite inconvenient if someone were to drive such a long distance to bring them to me. I was only there for eight days. My cane was taken, but I fought for it and got it back two days later. I had lice, which was treated hours after I was admitted, so I was doing “human guide” with patients and staff alike until my cane was returned. I was afraid the heads of those assisting me would become infested, too, and it was a very depressing and uncomfortable situation. Treatment for lice is done twice within a week’s time, which is why there was cause for worry. The second round is to ensure that every bug has been killed. Therefore, to say that I was relieved when my mobility aid came into my possession again is a vast understatement.
During my stay, I was put on a women’s trauma unit, where aggressive patients do not usually reside. We are all grown. The psychotic patients were put with us trauma patients, so I was constantly in danger, and therapy groups were very few and far between because of the nonsense actively overwhelming our unit. I sat in chairs for hours as people drew pictures, played Pictionary, or watched television. I had to be content with nothing but the horrifying sounds of individuals being attacked and my own despair to keep me company. We were fortunate and got to use the phone frequently, because with COVID, visitors are not allowed. Discharge day did not come soon enough. It haunts me, even now.
I am strongly against medications for a multitude of reasons. Therefore, I was allowed to get information about another treatment option but did not take it up due to potential medical complications, which I would not have been in a position to deal with at the time. I expressed my concern to the individual who had let me discuss this drugless path, and my doctor told me I could not participate in it since I could not read the consent. I was so exhausted that I didn’t think to tell him that forms could be read to me, so I just tried to explain my reasons and let this pass. The point is, if someone is interested in a treatment option and is blind, not being allowed to go through with whatever it may be because it is in print is unacceptable.
My final hospitalization is brief, yet, in a way, more horrifying. I was on a unit with both males and females this time; all of us are adults. It sounded like my cane would be taken, but I got out of that one, so I had it for the entirety of my stay. I was close enough to a place where books could be delivered, and thankfully they let me have them. We had only three therapy groups per day, which meant more hours spent doing practically nothing.
Discharge time is where things take a turn for the worse. I was signing a form, both cameras and humans keeping a very watchful eye. My signature is illegible more often than not, and a staff member had an issue with this fact, even going so far as to say that she couldn’t let me leave with that. She had someone look at how I signed other things, and another staff member said, “Barely,” which was humiliating, at best.
I was almost literally trapped, because I can't write what they judged as legible print, and an employee wouldn't sign as a witness saying I got the information I was supposed to have. I have only ever been on locked units, and this was one. Sobbing, I finally exited the premises, terrified that I would be brought back immediately by staff for showing such strong emotion. I have never recovered.
Were there some people who had tried to make such environments such as these as accessible as they could for me? Absolutely. And I thank them, greatly. However, the injustices run rampant, and I am quite tired. I refuse to sit by, whether I am on the in- or out-side. I propose that we, as the National Federation of the Blind, come together to eradicate the nonsense and conduct advocacy work with psychiatric hospitals all across the country. I encourage you to come forth with your stories.
To the hospitals, I say that canes are just as much a mobility aid as wheelchairs. Putting us in wheelchairs and taking away our autonomy is not providing us with the proper accommodation. Please have areas within the building or something of the sort for blind patients, or research how to incorporate audio description so that we may watch movies and television along with the others in the many hours that we have spare time. Those are just a few things you can do to improve the quality of care for the blind. We deserve so much better. We are humans, too.