Being a Disabled Muslim Woman

Sunday, June 8, 2008

Bismillahirrahmanirraheem.

I've not been blogging lately because honestly my life has just been full, mostly in a good way, Alhamdulillah. School is keeping me really busy for the next few weeks and I have been trying to find time to work now that I can set my own schedule. I've also been doing more knitting, praying, and listening to Islamic lectures, masha'Allah. And I've started swimming again sometimes which is really good for me health-wise. I just have been feeling content (except when I'm stressed out with school) and not felt really moved to post something either way - and I don't like posting things when I feel like I don't have anything concrete to say (whether it's for a good or bad reason).

So I was wondering for weeks what to write for the Muslimahs Speak Up! Carnival, which comes out in less than a week insha'Allah! I was just reading something earlier this evening for my Religion in the U.S. class (totally not my area, but I have to take a "Western religions" course to graduate) about the sacralizing of illness and disability in 19th-20th century Catholic America, and it really struck a chord about a tension I've felt in my own life that I think is often tied up with religious belief in general, and for me, Islam in particular. I was surprised because this specific reading ("Mildred, is it fun to be a cripple?" from Between Heaven and Earth by Robert Orsi) made it seem like this is something that is specifically tied to Catholicism, and while the overtly devotionalistic ideas may be, and while the attitudes I am about to discuss may be rooted in Catholicism, I can attest to the fact that they are pervasive in everyday American life, at least, and, I believe, in life and religion in many cultures.

I should preface this by saying that I'm approaching this issue as a revert Muslimah, as an American who grew up below "poverty level" according to American income standards but with a roof over her head Alhamdulillah, as someone who has had invisible illnesses and disabilities to one degree or another for most of my life, and as someone who deeply cares about ableism and about the rights of people with illnesses and disabilities, especially those with "invisible" illness. What I want to talk about is the idea of disability, poverty, and other tribulations that we experience as things that are somehow good or virtuous. I want to talk about this from the perspective of a Muslim woman who is living with a disability, and I want to bring in how Islam affects my life because of this, but I am not specifically responding to how Muslims treat people with disabilities or anything like that - criticisms of reactions to the disabled and actions towards "us" are things that I've experienced in society as a whole, not specifically in interactions with Muslims or anything like that.

Being disabled was instrumental for me in accepting Islam. I was Buddhist for several years before becoming Muslim, as I've mentioned elsewhere, and there are still many things I love and find valuable about Buddhism. If it weren't for certain experiences I've had, especially over the last couple of years, and my own personal understandings of both religions, I might be in a very different place right now and might not have been so drawn to Islam. One of the things that I was struggling with that I felt like Islam answered was my experiences as a woman and things I have questioned about relationships and gender roles at this point in my life. The other thing is the increasing feelings of despair and lack of control I had over being disabled. I have been a polytheist for most of my life and accepting monotheism and the idea of an omnipotent, omniscient creator was perhaps one of the biggest changes for me when I was thinking about reverting. But this connected a lot with my experience of disability. The sister that was really instrumental in helping me learn about Islam and drawing me to even read about it at first explained that it made sense to her because the doctors can't fix it, you can't fix it, your parents can't fix it, your friends can't fix it...when you realize this, and you realize that you don't even have the power to get out of bed or to take your own life or you have these moments where you literally just know on a very intuitive level that no one in this dunya has the control...that is when it makes sense that Allah subhanu wa ta'ala is the only one that is constant, that has the control, that can be relied on. It gives a completely new dimension and deep understanding to la illaha ilallah, and it might seem depressing, but for me it was extremely, extremely freeing and it made things make so much more sense.

And yes, I do believe that Allah subhanu wa ta'ala gives us tribulations in our life for a reason. I know that my experiences, first of all, are much worse than some and much better than others. I know that I am who I am today because of these experiences and I have a lot to be grateful of for that. I know that one of the benefits of tribulation is to be humbled before Allah subhanu wa ta'ala.

But I have serious problems with the idea that illness is somehow a virtue, which I think is really pervasive in society, and perhaps in many other societies as well. I certainly experience this on a regular basis. I also have real problems with the concept of poverty as a virtue. Most able people do not wish to be disabled - I know I would not wish to have worse illnesses than I do. Most well-off people do not wish to be poor - I know I would not wish for the rest of my life to be like my childhood, or poorer. But yet often it's made out that being disabled or poor is something that disabled and poor people should just passively accept and/or be excessively grateful for. Allah knows best, and yes, we should be thankful for the chance to learn from our experiences. But this tribulation-as-virtue mindset is something that is more often than not projected ONTO disabled and poor people's lives in order for us to behave and act/react in certain ways, and I have serious, serious problems with that. As Mal says in "Our Mrs. Reynolds" from the TV show Firefly, "There are more than 70 earths spinnin' around the galaxy, and the meek have inherited not a one." While I am not challenging that there are benefits of tribulation (Hamza Yusuf has a very illuminating lecture on that very subject), this is something that's often used to marginalize people who are in these situations.

Another problem with this mindset, which Orsi mentions in the reading I talked about, is the idea that is in tension with the "illness is beneficial/holy/sacred" mindset but often coexists with it, which is that there is usually a subconscious (and sometimes conscious) implication that one has done something wrong in order to get themselves in this situation. From the perspective of many religions, it can be that the tribulation is implicitly seen as a divine punishment, but more often in the modern day, doctors and healthy people explicity feel the need to inform sick people that if we'd just made all the right choices, we wouldn't be sick. If we just followed this particular diet, or weren't so fat, or had exercised more, or weren't female, or didn't have children, or didn't take this or that medication, or didn't refuse to take this or that medication, or any other of a long list of explanations, we wouldn't be so sick. It is refreshing whenever I visit a back or pain doctor who doesn't inform me that if I'd just lose weight, I wouldn't have fibromyalgia and a really terrible back - which completely ignores the fact that I was a normal-sized child when my back condition developed (I was five years old and extremely active, in fact), and the fact that I was actually fat for a long time before I got diagnosed with fibromyalgia - which was probably triggered by other things. Even the doctors I see for eating disorder treatment often suggest that I should just exercise more and eat less and I'd lose weight, ignoring the fact that exercising more and eating less is what destroyed my metabolism and made me so prone to gaining weight in the first place (and that is without bringing in the mental health issues!). If I'd just think more positively, I wouldn't need pain medication. There is also an element of ageism and sexism that is often involved, even with the kindest and otherwise most understanding doctors, particularly with mental health problems and invisible illnesses.

The problem of how to treat people with illnesses and disabilities and how to accomodate the feelings and emotions that our experiences bring up for us is really huge, as well. Orsi mentions that because complaining implies that there is actually something not right about the situation, any kind of complain, "whining," etc. is stifled. This is my experience as well; I certainly believe in the power of positive thinking and visualization, but on a very immediate level, coping with disability is really difficult, not only physically, but emotionally. Dealing with trying to feel validated while you are being told conflicting things by doctors, friends, and acquaintances who got their medical licenses out of a Cracker Jack box, and then on top of that, trying to deal with coping with being ill in the first place and issues of treatment in a practical sense, plus whatever other life experiences you are having, is HARD. And while I really admire people who can face these tribulations with really saint-like amounts of equanimity, disabled people are all too often human, and this is really often forgotten. I don't know how many times people have felt the need to tell me about their friend of a friend of a friend who was so so so sick but never complained and was just the perfect saint up until the day they died. This ideal of the sick person who does not take up anyone's space or time or energy and never opens their mouth to say a bad word is nice in theory, but the reality is, disabled people need care. We have concerns. We have problems. The idea that we are supposed to fit into a particular ideal of what a sick person is does not and should not work, in reality, and sick people who do not fit this motif are often left invalidated at best and emotionally and physically abandoned at worst.

I think ultimately it comes down to this. For me, religion and my understanding of Allah has been extremely beneficial and extremely important in coming to terms with my experiences as a disabled person and how I deal with being disabled. But every disabled person has the right to come to terms with those things on their own, and not be pressured into a certain religious or secular ideal of how to cope with tribulation. Often the kinds of "platitudes" disabled people receive can actually be helpful, but a lot of the time, they can be hurtful, too. It's not that the idea of tribulation as something that is meaningful and even virtuous needs to be completely thrown out of the window, but how we think about disability ourselves is something we deserve to be able to rationalize for ourselves, and not be forced into. I think one of the best ways of coping with it, for both disabled people and the able people interacting with them, is to allow the disabled person to self-define and allow the interaction to go from there, rather than the other way around. It's like making pronouncements about the hellfire; if you are not the one in the situation or in the know, or at least with some personal experience in the situation, it's better to tread carefully and not to label someone or their experience, regardless of whether you think that experience is a good or a bad thing. Because ultimately, only the person themselves and Allah can have an idea of what it feels like, and ultimately only Allah can truly know how this tribulation works in this person's life, and Allah knows best.