HANDICAP AND MEDICAL STAFF
I am affected by a rare and invisible ophthalmologic disease named “Keratoconus”. Due to this ailment, I have benefited from a transplant of cornea on both eyes. Nevertheless, the transplant cannot cure it and I am obliged to follow a treatment, manage the changing condition of my vision every day and accept some limitations in my daily life, e.g. I cannot drive by night.
Even if my condition is far more enviable than any other disabled person with heavier constraints, e.g., a person in a wheelchair, I consider that I have something in common with the latter: the attitude of the medical staff toward our autonomy.
As far as I can remember, I have never denied my vision problems and always adapted to them. Therefore, I accepted that some activities were not possible to me anymore. In essence, the latter is not easy, but I deal with it as I deal with other facts of life that I am not able to change. Usually, I behave and think like an adult. Consequently, I am the first one to follow restrictions, often imposed by myself, because I realize that doing this and/or practicing that is taking a risk for me and others. This is this attitude that generates problems with the medical staff and obliges the disabled to defend their autonomy.
To illustrate my statement, let me tell you the recent experience that I had with my GP.
To practice my passion, the French Scuba Diving Organization requires me to have a health certificate each year stating that I am fit for that sport. Basically, this certificate is not more complicated and relevant than the certificate any sport organization requires from his members in France.
In addition, the French Scuba Diving Organization has clearly established the criteria to declare if you can or cannot dive and this list is easily available on the web. According to that list, my eye condition is not a limiting factor for recreational scuba diving.
I supplied that list to my GP in an attempt to help her and show her that I know what I am talking about.
Not only did she ignore the document, but she refused to issue me with a certificate. Her decision was not even based on a proper medical check. She did not even examine my eyes. Simply, she stated that I must visit my ophthalmologist first. Till this is done, I shall not get that certificate from her. Her attitude took me by surprise. At the same time, I realized that I could not afford the luxury of annoying her because she is the GP I am assigned to by the French NHS. Going to another one is not an option because in our area, other practicians are not accepting any new patients.
Having this in mind, I calmly, respectably, and clearly explained to her that she was inventing new rules. The text from the Scuba Diving Organization is clear enough and there was no reason that could justify paying a visit to my ophthalmologist at my own cost. Furthermore, I sent a “silently loud” message with my body language: I remained seated in front of her, while she was showing me the way to the exit. Eventually she surrendered, and I got my certificate.
Moreover, I contacted my ophthalmologist who issued a certificate confirming that my eyes are fit for scuba diving. Of course, I shared the document with her as a demonstration of my skills for the condition required for that sport and my sense of responsibility when dealing with my ailment.
This experience could have remained an incident that I could have easily forgotten. Generally, I am good at focusing on the positive and ignoring the negative. To the contrary, I am still thinking about this event because I have felt like I have been demoted as an adult person. And the only reason for her to look down on me is because I have grafted corneas.
There is no scientific evidence that grafted corneas, as the result of an advanced keratoconus, have a negative impact on my cognitive ability. Hence, my decision-making process is still rational and supports consistent decisions. Also, when my knowledge of a topic and/or my perception of a situation are neither correct nor sufficient or both, I am opened to clarification and can change my mind. This has already happened.
How it could be that she considered that she might easily refuse to issue me this certificate? I see the following main reasons:
1. She is a doctor, and I am a patient. Therefore, my opinion, deriving from my experience, has no value vs her expertise
2. Because she claims that she has the expertise, she knows better than I what is good and possible for me, the disabled patient
3. She was entering an unknown area to her but could not accept that she was incompetent and tell me. She preferred to invent new rules.
Let us start with point 3. In essence, a patient with a rare disease must play an active role in choosing a medication and/or treatment. Otherwise, he or she is turned into a vulnerable target for the medical staff infatuated with their status.
Because of point three, the first point is critical. You have to get your experience recognized and your voice must be heard, despite the fame and status of your medical contact!!! With your experience, you have the power to say NO!!! Do not hesitate to show your determination even with body language.
All things considered, I reckon the root of the problem, in this case, lies with point number 2. The reality is that I am an impaired person. Unfortunately, some around me understand that this status means I need to get assistance and support and both must be decided by experts. As a result, many doctors, nurses, etc. are keen to impose new rules they decide unilaterally. Referring to the power given by their medical status, they disallow me to perform many activities I am confident that I can do. It seems, for them, that the supervision or guardianship of experts of any kind is requested for my own good.
I am sorry doctor; I won’t be patronized. My aim in life is to enjoy and achieve as much as I can with my ailment. I won’t allow you to restrain my autonomy because you have a wrong understanding of your role. I know that you feel important when looking down at patients. The worst is that you have been skilled to behave that way all along your training cursus. And I know that when I behave differently, I am seriously challenging your status and it hurts your ego. You have already rated me as a BAD patient.
Along these lines, there is a paradox in your general attitude toward patients. Take me as an example again. I always complied with all previous prescriptions of my GP. Basically, I know I am gaining in age. Consequently, my body starts showing signs of weakness that must be controlled and managed. Thus, I have already gone through various unpleasant exams, e.g., coloscopy, and I am taking medication linked to a declining physical status, e.g., statin. I thought that the purpose of this was to ensure that I could have the most active life possible.
It seems not. The last encounter with my GP suggests that she is only wanting to preserve me from possible problems only to keep me fit to watch TV in my sofa and behave like a couch potato. Is it really the objective of being healthy when getting older?
To summarize, we have here a combination of a patronizing attitude toward disabled people with an intention to maintain strict control over aging patients. Is it not adding insults to injuries?
In my view, the first step to change this behaviour is to remind those doctors, nurses, etc. that the aim of any medical mean is to restore a maximum autonomy to a patient that is a PERSON before being a disabled/sick individual.
Various institutions, e.g., United Nations, have clearly defined what being autonomous means for a disabled person. Here is the one from the Californian State / USA:
“The right to personal autonomy is a basic right of every human being. It includes an individual’s right to develop their personality, to express hopes and dreams, and make choices and not be unreasonably limited. It means choosing whether or not to act in a certain way or have certain experiences. A person has a right to determine their own life and make their own decisions, even when those decisions are not ones others would make.”
This right to determine your own life implies that the patient has to be involved in the decision-making process and must be provided enough information to make an informed consent. Disabled persons welcome support when necessary, BUT refuse to be controlled. The final decision remains with them!
I realize that the behavioral change from “control” to “support” is a quantum leap for the majority of the medical staff members. But, for disabled people, it is a fight for freedom. We will not give up and the medical staff better be prepared to this new role.
“We Shall Overcome”
