A few years ago when I was working as a freelancer, I was lucky to be involved in a project that ran free photography workshops for people with spinal cord injuries. It was a really great project and I was happy to be working within the areas of arts, disability and mental health – all personal interests of mine. Some of the people who participated in these workshops had such severe injuries that they could not move anything but their facial muscles, which certainly put my struggles with narcolepsy into a certain perspective. It also brought up a complicated question: do I actually consider myself disabled?
Here I am going to be discussing the idea of disability and what it means to personally identify as such, rather than the legal definitions of disability as they pertain to government services etc. I will admit that I am no expert on this topic, but I am writing about my own journey of coming to grips with this issue. Please don’t hesitate to let me know if I’ve made any mistakes in terminology etc.
To start with, I want to discuss according to this definition of disability from the World Health Organisation:
“Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.”
Under this definition, narcolepsy can definitely be seen as a disability. It very clearly impairs our ability to stay awake, and thus limits many activities such as driving, working or even having a conversation. However, I have never seen narcolepsy mentioned in literature about disability or on websites surrounding disabilities, and as we know many people with narcolepsy have had difficulty “proving” the real impact that their condition has on their life (and thus gaining the right to welfare, services, etc.)
As most people reading this will know, narcolepsy is a variable condition that affects each patient with their own unique blend of symptoms, at different levels of severity and frequency. For some, this means serious disruption to their daily routine. There are some people with narcolepsy who can fall asleep suddenly without warning, causing immediate physical risk. Cataplexy can be equally severe, with some particularly severe cases leaving patients wheelchair-bound in an effort to prevent dangerous collapse. However, at the other end of the spectrum, there are those who can live fairly “normal” lives; holding down regular jobs, maintaining healthy relationships and being able to do most activities that any other person would expect to do.
From various discussions in the many online groups I am part of, I feel like I am fairly average in terms of the severity of my own narcolepsy. I experience all of the symptoms, but some hardly affect my life at all. For example: there have been times when cataplexy caused the most disruption to my life, while at other times it has barely affected me at all (especially since starting on Xyrem).
This seems to be the case for most people with narcolepsy, with each individual affected in vastly different ways, even on a day-to-day basis. Some days may seem almost entirely uninhibited by sleepiness or other symptoms, while the next is so weighed down by narcolepsy that every activity feels completely draining.
In this way, I find categorising myself to be extremely difficult. Some days I feel like I am operating at a totally normal level, and that everything is possible, whereas other days I struggle all day to get a single thing done, and the combination of sleepiness and brain fog drive me insane with frustration. Before I started on Xyrem, I began to wonder whether holding down a full-time job would ever be a realistic option for me, and that was when I truly began to feel like my narcolepsy was preventing me from living the life that I wanted – and therefore making me feel “disabled”.
I think part of my reluctance to claim my own state of disability is a mixture of stubbornness and fear. I am too stubborn to admit that there might be a problem that I can’t fix, that I can’t overcome just by thinking myself better. To say that I am disabled feels like admitting defeat in a strange way, that I am giving myself over to something that will never change. In another sense, I simply don’t fit the picture in my mind of what “disabled” looks like.
In actual fact, I think that this uneasiness with the term is common to many people who are disabled. Our society often perpetuates the idea that disabled people are somehow less human than others – living less happy and fulfilling lives than the rest of us, doomed by their individual impairments. Because of these learned associations, we are hesitant to link ourselves to the idea.
People who are disabled in visible ways are hardly ever represented in mainstream media in ways that depict them as average citizens, just going about their lives like everyone else. If they are included it is often in a tokenistic way, using the narrative of disability to invoke feelings of pity, or even as objectified “inspiration porn” for able-bodied people (see this enlightening TED talk by the late Stella Young for a great description of this phenomenon).
It’s hard to admit, but I think I also have a certain level of fear surrounding visibly disabled people. I did not grow up with much exposure to people with obvious mental or physical disabilities, and while I would never consciously discriminate against anyone and intellectually would always stand up for other peoples rights, I am embarrassed to recall several times in my life where I have felt uncomfortable simply being in the presence of a visibly disabled person.
I think part of this stems from our own fear of being disabled, a deep-seated repulsion instilled in all of us. From an evolutionary perspective, we are wired to fear sickness of all forms, and this is extremely hard to confront when put in situations where we are face-to-face with someone who actually has to deal with this. We often fear what we do not understand, and without knowing anyone who is disabled, it can be hard for us to have a good understanding of what their lives might be like. This is what makes this debate a sore subject for me to think about, as I try to actively work against my own previously hidden prejudices. I am in no way endorsing or trying to make excuses for these feelings, just trying to bring them to light in order to dissect them.
The following are quotes from writer Simon Stevens, who has influenced my opinions on the subject:
“The reality is that whether I like it to not, there does need to be a level of self-interest in personal survival and an unwillingness to deliberately risk sickness or disability to avoid the breakdown of society as we understand it. This however needs to be within a mature understanding of the duality of sickness and disability as being accepted by society but still something to avoid if possible.”
“While we may be unable to remove the fear of disability, it is important we understand it exists out there and within ourselves, and start to have the ability to discuss our true feelings in a mature and constructive manner, so as a society we can reach a new understanding of sickness and disability through honesty and openness as opposed to politically correct sound bites and a degree of pity and patronising behaviour that masks people’s fears.”
I find many parallels in accepting people with disabilities and our process of coming to terms with our own diagnosis. It takes a lot of time and self-reflection to come to a place where you finally understand that while your life will be different from others, it can be equally worthwhile. While we may wonder about the lives of “people with disabilities”, I think for the most part we would find that their lives are just like ours – just as similar or different from one person to the next. Of course, disability is a spectrum, just like narcolepsy, and some have worse things to deal with than others; but this is exactly why I think placing ourselves somewhere on that spectrum is nothing to be ashamed of.
In order to gauge the opinions of people with narcolepsy on this subject, I ran a couple of polls on my instagram account asking “Do you consider narcolepsy to be a disability?” and “Do you consider yourself disabled?” See the results below.
I think these results show that the majority of people accept that narcolepsy can be a disability, which I think is great news. As for how many people feel “disabled” – I don’t really have much of an opinion about that, as I cannot possibly know how badly people are affected by their condition. However, I would hazard a guess to say that more than 58% of people with narcolepsy do experience pretty obvious limitations in life due to their conditions, so I’d be interested to know if their perception would change after more reflection on the question and the true meaning of “disability”.
During the polls, I also received many messages describing why people would not label themselves as disabled, mostly along the lines of “I have narcolepsy but it doesn’t define me” or “Narcolepsy doesn’t stop me from living my life”. I know these comments were well-intentioned, and I’m happy for people who have reached that level of acceptance, but I’m sure plenty of people with other disabilities would say the same about their impairments while not feeling the need to defend themselves against the simple idea of having a disability. We need to make sure that our picture of disabled people includes those who accept and acknowledge their differences but are not defined by them, alongside those who may not have as much choice.
There are millions of people with disabilities living in the world today who would argue that disability is nothing to be ashamed of. Many of these people live healthy and happy lives, with the full spectrum of experiences, despite often having to make concessions that allow for their individual needs. Being “disabled” is simply admitting that you have barriers that prevent you from doing certain things as easily as others can. I think of it as being realistic about your personal situation, it doesn’t mean giving up or “playing the victim”.
Another aspect that plays a part in preventing people from identifying as disabled is the concern that their problems aren’t “bad enough”, and that by calling themselves disabled they would be somehow taking away from those with worse problems. As people with narcolepsy, we often suffer from internalising our issues and feeling guilt over the symptoms we can’t control. Our condition is all but invisible to others, leading to a feeling that we might be faking it or making a big deal out of nothing. I strongly believe we need to stop apologising for ourselves and realise that while narcolepsy might not be the worst thing in the world, it is still a legitimate medical condition that does make certain things in our lives harder. Denying the fact that narcolepsy is a disability only helps people to misunderstand this fact.
In some ways this is a result of narcolepsy being an “invisible disability” – we can usually decide whether to let people know about our issues or not. As I’m sure many PWN have experienced, this can be both a good and bad thing. I’ll use a person with a spinal cord injury as a comparison. At first glance, it is much easier for a person with narcolepsy to avoid being stereotyped in a certain way, as we look “normal” (for the most part, when actually awake!), as opposed to the obvious difference of a wheelchair. However, when the subject of our condition does arise, it can be much harder for us to convey the serious and disabling nature of our condition to others.
On the other hand, labelling oneself as “disabled” can have consequences. I think many people out there have the same internal conflict with the word that I do, wanting to be accepting of people but not having the full scope of knowledge about how to navigate unfamiliar situations. People may feel awkward about it, or act in a patronising way – as if you need to be constantly looked after. It may also have serious consequences in a work setting, as some companies will have certain rules and regulations about employing people with disabilities, while others will have unspoken ideas about your ability to work (which in the worst case may lead to losing a job!)
As much as I have been trying to interrogate my feelings on the subject, disability is a concept I continue to struggle with. If I am rational about it, I know that I think narcolepsy is a disability, and being more readily labelled as such would help other people to understand that it does have a significant impact on our lives, as well as acknowledging the fact that other people with disabilities can also live relatively normal lives (just as some people with narcolepsy can). However, there is still an emotional part of me that cannot reconcile my initial reaction to the word and some of the ideas that it represents, and I know that others may have a similar (if not worse) reaction.
In more recent months, I have been experimenting with referring to myself as a disabled woman in conversations with friends and co-workers (when relevant to the conversation), and I do feel that it often makes it easier to discuss the unique struggles that I face. When muddled in the language surrounding narcolepsy, I think the fact that my sleepiness and other symptoms are quite separate from the average person’s experience is often overlooked. There is strength and succinctness in the word “disabled” that I actually find quite empowering, and I think I will continue to use it in appropriate settings.
I also think that it is an important tool of awareness for people with disabilities, and invisible disabilities in particular, to call out the fact that we do exist and manage to live in the world as “regular” people. While we might not be able to push along greater representation in the media, we can be the representation that other people need to see in the world, just by being unafraid to call ourselves out for what we are. Disabled.
I would love to hear some comments from other people with narcolepsy about how you feel about this topic. Would you describe yourself as being disabled? Or maybe there is another word that you would prefer?