Blog Against Disablism
May 1 was "Blog Against Disablism Day". I'm coming to the party late, but coming both from a family that has to provide 24 care for my severely handicapped brother and having recently injured myself, I wanted to say a few words on the subject. These are musings, observations, and reflective only of my own experience. I write this simply to raise awareness.
My current state, due to the prominence of crutches, and Kenny's day-to-day life, constitute highly visible disabilities. Ironically and frustratingly, it is often easier for me to get help than it is for people with more chronic disabilities to get the support they need--everybody (including myself) knows that this is a temporary situation for which I will only need help for a short time. Thus, nobody is going to get burned out helping me which can be a real problem for caretakers, particularly in situations where the person requiring care-taking is chronically disabled and not likely to experience significant improvement in their condition as time goes by. My family sees this burn-out a lot with people who come to care for Kenny. Kenny is an easy person to love--sociable, handsome, and not abled enough to act out even if he wanted to. Still, for the most part, he is not going to get better and this wears on those who care for him day in and day out. Simply put, it is incredibly hard to see somebody you love suffer and know that some parts of their suffering are immutable. We have been blessed to find many good nurses and caretakers for Kenny over the years, some of whom have stayed with the family for a long time, but none of them stay permanently and we know that none of them ever will. Grateful as we are for their help, we also mourn that the care-givers themselves are not given better support by the system at large, and the coming-and-going of personnel through the house is difficult for all of us as we get attached to the generous people who help us who ultimately leave. Again, this is hardest on Kenny, who clearly mourns when people who have been caring for him for months and years leave and don't come back.
And of course it is INFINITELY easier for me to, for example, get somebody to run pick up a sandwich for me (how I got lunch yesterday) than it is for somebody with an invisible disability--depression, severe carpal tunnel, CFS, dyslexia, etc--to get people to make reasonable and gracious accommodations for such hidden difficulties. And here is the main point of this post, if it has one: we, as a society, simply do not do enough to help people with disabilities. We don't provide enough services for them, and what services are available are both paltry and difficult to navigate. If you have a disability, it is incumbent upon you to do virtually ALL of the work to get the rights and accommodations one is entitled to BY LAW. I cannot tell you how many social workers my family has worked with over the years, and for every one that was enthusiastic, helpful, and informed about what services we could tap we have run into at least an equal number with crushing case-loads, insufficient training, or an impossibly dogmatic approach towards dealing with bueracracy. These problems are not the fault of the social workers, they are the result of a system that is fundamentally more dedicated to shutting people out of services, in order to save money, than it is to helping them.
Though I recognize that it is in many ways an incredibly hyperbolic film, I cannot help thinking about Michael Moore's Sicko and the fundamental question it poses to its audience: Why aren't we more dedicated to helping one another? Why is it easier for me, at a school like Tufts, to get training in how to use Endnote than it is for me to get training in how to more adequately assist my students who are dyslexic, non-native English speakers, or hearing-impaired? Why must we battle insurance companies to get them to pay for new wheelchairs, accessible vans, ergonomic keyboards, light-boxes to combat seasonal affective disorder? Why is it so hard for care-givers to get respite care, or to find emotional support? These are not questions that should be being asked only by those with disabilities, either visible or invisible. They are questions that effect all of us. We need, as a society, to devote more resources to these questions, both monetary and otherwise.
Being on crutches this week, I reminded of how much harder it is to do almost anything that I usually take for granted. I don't say this to whine. But it is harder for me to feed myself, because it is difficult to get plates from my kitchen to the dining room--I ate my breakfast standing on one foot in the kitchen this morning, because that was the simplest option available to me. (When was the last time you bore all your weight on one foot for long enough to eat a bowl of grape-nuts? Try it sometime.) It is harder for me to type this, because my wrists hurt from the crutches. It is harder for me to bathe, and harder for me to get my usual responsibilities taken care of--picking up a student paper from my mailbox in the department which is on the second floor of a non-accessible building, feeding my cats or cleaning their litter boxes, watering the plants on the front porch. I am, resultingly, tired and cranky and my work suffers for it. I have enough perspective to know that this experience forces me to look long and hard at my own sense of privilege and entitlement and to realize how very lucky I really am. Moreover, it forces me to take responsibility for my own actions and blindnesses with regard to those with disabilities both visible and invisible. I have lived with someone who serious disabilities for my entire life. Several of my friends have disabilities of various sorts. And yet, sometimes, I still forget--forget how to offer help in appropriate ways, forget to take their disabilities into account. To remember is my responsibility, and I am grateful to all those who patiently put up with my fumbling and struggling.
*For somebody who writes about health privilege better than I can, go here: http://jayangel.wordpress.com/2008/05/01/blog-against-disablism/
And thanks to jadelennox for the tip!
My current state, due to the prominence of crutches, and Kenny's day-to-day life, constitute highly visible disabilities. Ironically and frustratingly, it is often easier for me to get help than it is for people with more chronic disabilities to get the support they need--everybody (including myself) knows that this is a temporary situation for which I will only need help for a short time. Thus, nobody is going to get burned out helping me which can be a real problem for caretakers, particularly in situations where the person requiring care-taking is chronically disabled and not likely to experience significant improvement in their condition as time goes by. My family sees this burn-out a lot with people who come to care for Kenny. Kenny is an easy person to love--sociable, handsome, and not abled enough to act out even if he wanted to. Still, for the most part, he is not going to get better and this wears on those who care for him day in and day out. Simply put, it is incredibly hard to see somebody you love suffer and know that some parts of their suffering are immutable. We have been blessed to find many good nurses and caretakers for Kenny over the years, some of whom have stayed with the family for a long time, but none of them stay permanently and we know that none of them ever will. Grateful as we are for their help, we also mourn that the care-givers themselves are not given better support by the system at large, and the coming-and-going of personnel through the house is difficult for all of us as we get attached to the generous people who help us who ultimately leave. Again, this is hardest on Kenny, who clearly mourns when people who have been caring for him for months and years leave and don't come back.
And of course it is INFINITELY easier for me to, for example, get somebody to run pick up a sandwich for me (how I got lunch yesterday) than it is for somebody with an invisible disability--depression, severe carpal tunnel, CFS, dyslexia, etc--to get people to make reasonable and gracious accommodations for such hidden difficulties. And here is the main point of this post, if it has one: we, as a society, simply do not do enough to help people with disabilities. We don't provide enough services for them, and what services are available are both paltry and difficult to navigate. If you have a disability, it is incumbent upon you to do virtually ALL of the work to get the rights and accommodations one is entitled to BY LAW. I cannot tell you how many social workers my family has worked with over the years, and for every one that was enthusiastic, helpful, and informed about what services we could tap we have run into at least an equal number with crushing case-loads, insufficient training, or an impossibly dogmatic approach towards dealing with bueracracy. These problems are not the fault of the social workers, they are the result of a system that is fundamentally more dedicated to shutting people out of services, in order to save money, than it is to helping them.
Though I recognize that it is in many ways an incredibly hyperbolic film, I cannot help thinking about Michael Moore's Sicko and the fundamental question it poses to its audience: Why aren't we more dedicated to helping one another? Why is it easier for me, at a school like Tufts, to get training in how to use Endnote than it is for me to get training in how to more adequately assist my students who are dyslexic, non-native English speakers, or hearing-impaired? Why must we battle insurance companies to get them to pay for new wheelchairs, accessible vans, ergonomic keyboards, light-boxes to combat seasonal affective disorder? Why is it so hard for care-givers to get respite care, or to find emotional support? These are not questions that should be being asked only by those with disabilities, either visible or invisible. They are questions that effect all of us. We need, as a society, to devote more resources to these questions, both monetary and otherwise.
Being on crutches this week, I reminded of how much harder it is to do almost anything that I usually take for granted. I don't say this to whine. But it is harder for me to feed myself, because it is difficult to get plates from my kitchen to the dining room--I ate my breakfast standing on one foot in the kitchen this morning, because that was the simplest option available to me. (When was the last time you bore all your weight on one foot for long enough to eat a bowl of grape-nuts? Try it sometime.) It is harder for me to type this, because my wrists hurt from the crutches. It is harder for me to bathe, and harder for me to get my usual responsibilities taken care of--picking up a student paper from my mailbox in the department which is on the second floor of a non-accessible building, feeding my cats or cleaning their litter boxes, watering the plants on the front porch. I am, resultingly, tired and cranky and my work suffers for it. I have enough perspective to know that this experience forces me to look long and hard at my own sense of privilege and entitlement and to realize how very lucky I really am. Moreover, it forces me to take responsibility for my own actions and blindnesses with regard to those with disabilities both visible and invisible. I have lived with someone who serious disabilities for my entire life. Several of my friends have disabilities of various sorts. And yet, sometimes, I still forget--forget how to offer help in appropriate ways, forget to take their disabilities into account. To remember is my responsibility, and I am grateful to all those who patiently put up with my fumbling and struggling.
*For somebody who writes about health privilege better than I can, go here: http://jayangel.wordpress.com/2008/05/01/blog-against-disablism/
And thanks to jadelennox for the tip!