Many disabled people rely upon Personal Care Assistants (or the equivalent by any other name) for help with many daily tasks such as dressing or bathing. In some cases one’s carer might end up being a parent or friend, but those of us with Independent Living arrangements usually rely upon an assistant supplied by the building we live in or by the agency which began the particular Independent Living project. Still other people have to simply hire out a PCA themselves, which can be a very harrowing process. Having a PCA can be both liberating and distressing.
On one level, it can be very liberating to have a PCA who is not one’s parent because typically in this case one has escaped from under the watchful gaze of their often protective mothers and fathers. Still, it may be that a disabled person feels that he will receive better care at home, from a parent, than from a hired worker. In addition, even in an Independent Living situation, privacy can be compromised when one has to conform to the schedule of a PCA, and considering that PCAs will often see us naked or in other embarrassing situations, there cannot be very much privacy with regards to everyday body or health issues.
Things can become further complicated by the fact that we are all sexual beings–and certain physical urges and feelings are going to surface in all of us, whether or not we feel comfortable with this happening around a PCA. A caregiver might discover that a male client has developed an erection, or that a female is experiencing menstruatioon. They will thus be confronted with our bodily responses to sexuality and reproduction. But they are typically required to aid with enough to get one started for the day. What should we expect of these people when they are confronted with our sexuality, either directly or indirectly?
Typically, a PCA is not expected to worry about her client’s sexuality. If there is a mess left by a wet dream or blood from menstruation, it will be cleaned and perhaps not even discussed–likely out of embarrassment on the part of both parties. The truth is that many able-bodied people do not know what to make of disabled people with regard to sexuality. Being disabled does not negate one’s sexuality. We experience the same feelings and urges as all other people but because we are seen as “unfortunate” or “broken,” it’s typically assumed that everything’ is broken. Disabled people usually come across this stereotype often in life.
It may be through a stranger who invariably raises her voice to an unnecessary volume when speaking due to an assumption that we must be deaf when we are not, or it could be made just as clear by the uncomfortable looks given to us by family, friends, or a PCA when issues of sexuality emerge. This is unfortunate, and one would hope that a PCA would be more able than others to avoid these feelings, and to accept us as capable, sexual beings. But as a hired worker, a PCA is simply being paid to help with what we need in order to function in today’s society, and in today’s society sex happens behind closed doors and has little place in the daily grind of school, work, or many social events.
So, basically, an adult is expected to “take care of his needs” on his own time, behind closed doors, preferably behind lock and key, and not bother other people with “too much information.” But a disabled person in need of personal care is not an average adult–and I mean this in the following sense: An able-bodied adult typically would feel very embarrassed at requesting help in bathing and the like from anyone, and would be especially nervous around other adults.
Yet, as disabled people, we may feel the same awkwardness and embarrassment but we have often learned to overcome or “deal with” these feelings as a result of our dependence on others for help. If we require help with dressing or bathing we may also need help with preparing for sexual encounters (positioning, washing, undressing) and we may also lack manual dexterity sufficient for masturbation.
Does this mean that we do not feel the feelings of sexual arousal and desire? No! But, unfortunately, in part due to ignorance and in part due simply to the fact that many people are insecure about or uncomfortable with sex (able-bodied or disabled) it’s easier to assume that we don’t have those feelings so that it becomes one less thing to deal with for both us and the PCA. That’s right. Many disabled people are or have been in denial about their sexuality. I have been in the past! This is partially because there are so many battles to fight that we must pick the ones we can handle and partially because of the taboos and stereotypes which have come to us from parents, carers, or the media. So what can we do?
First of all, as frustrating as we may find this fact, we need to remember that the PCA is hired and ishuman.
Your PCA is hired.
It is a pretty simple concept–because the PCA is being paid, and is coming to work daily to assist you, she has certain rights as an employee, whether or not you are the employer. PCAs are given tasks which are usually considered very intimate (private) and often contribute very much to the overall work needing to be done around the home. But this doesn’t make them slaves. Just as we have continually stressed the importance of not doing anything sexually (or otherwise) which you find uncomfortable, a PCA has the right to tell you that something makes her uncomfortable and, as an employee and as a human being, her wishes will need to be respected.
Your PCA is human.
This brings me rather nicely to the next point. What I mean is that every one of us have biases, comfort zones and stereotypes which we apply every day in order to get through life. This is a very human thing–it affects ALL of us, and we must recognize this in a PCA. It may be that he is foreign-born, that he has strong moral principles against helping a client with certain things, or that he is simply ignorant and afraid. It may be that he will ask you an ignorant question, such as “Why are you asking me to do this? You don’t really have sex, do you?” or he might respond angrily by telling you that it’s not his business. And it’s not.
Nor is it our fault that we may need some help. But we must remember that these kinds of responses from a PCA are likely based in discomfort or ignorance. You can combat it, but you may not win, and that’s okay. It’s okay to try to educate a PCA who reacts badly to you but don’t force anything. Biases and beliefs can be hard to shake, and you don’t want to create severe alienation between yourself and your PCA. This does not mean that you need to remain submissive but that you should respect her boundaries. I’m aware that this is hard considering that often our own boundaries are not given much thought, or we cannot afford to maintain them…but we are all human and deserve this basic respect.