Signal boost: Change.org petition for more closed captioning
Posted: May 27, 2012 Filed under: Media, Politics | Tags: accessibility, American Sign Language, closed captioning, deaf Leave a comment »Watch the video and sign the petition for increased closed captioning here.
What I want to say about the attack on Rep. Gabrielle Giffords
Posted: January 10, 2011 Filed under: Politics Leave a comment »Author’s note: The awful shooting in Tucson this weekend is something that has affected me deeply; I have ties to the city. This post is a bit outside the normal realm of what I prefer to discuss here, but it is so important to me that I am making an exception to talk about it. Also, as I find relevant online materials, I’m adding hyperlinks to the text.
There are many, many things I’ve never wanted to learn: what it means to be afraid, what it means to live in a world at war, what it means to face deadly religious, cultural, or ethnic persecution, what it means to starve or be without a home, or what it would mean to experience my sister’s seizures or her blindness or, um, her entire reality. (Have I mentioned that she’s the braver of the two of us?) I’ve been so glad to live now, with near magical wonders of technology, safe and clothed and fed, to know that my family and friends are the same, that my sister is alive and happy despite her medical challenges, and to get to do what I love as a profession.
I was thinking about this last week, when I heard part of the Brian Lehrer show on WNYC – letting younger callers ask questions of “baby boomers” who called in. One baby boomer caller suggested that the spate of political assassinations (and riots) during the 1960s was a turning point, after which their idealism turned in, focused locally rather than globally. The boomers were the people in power during the wealth stratification which occurred during my lifetime, after the triumphs of social justice and technological advancement of the 1960s and 1970s, so listening to this, I was saddened to think of the loss of a few great leaders’ deaths as shattering the hopes of a generation. Despite the fact that I was a (young) adult when terrorists attacked my country in 2001, I wondered: how could that hopelessness set in? Now, I feel I am too close to knowing the answer, facing a lesson I never wanted to learn: Congresswoman Gabrielle Giffords was shot in the head Saturday while meeting with constituents, several of whom were also shot.
I think many of us are struggling to attach meaning here, or to get a handle on what happened. Almost immediately, the conversation focused on the current hyperbole-driven climate of the news media and our political infrastructure, and how the internet affects this (I appreciated Matt Bai in the New York Times, and James Fallows in The Atlantic, which I got from Kate Harding, and Paul Krugman in the NY Times). We do not know, at the time that I type this, what motivations drove the suspect to bring a gun to this event, to open fire, leaving at least six people dead and another 14 injured. But it doesn’t seem unreasonable to say that the culture of hyperbole makes it harder for any of us who are struggling with powerful emotions, isolation, marginal mental health, or oppressive societal forces (and more) to stay sane and healthy, that regardless of some details of the suspect’s life, if we permeate the news with artificially inflated conflict, and conflate news and opinion, and value profit over information, even the healthiest, smartest, most thoughtful of us may be hard-pressed to dig the signal out of the noise and not give in to despair or confusion. And for those of us whom the confusion claims, it’s all too easy to hurt ourselves and others.
I am surprised by some of my emotions: I am upset that I have seen no mention of the Rally to Restore Sanity. I know that some of my fellow liberals came away from the rally disappointed that it had not been a more strictly liberal event, but I disagreed with them. I’d love to have a major liberal demonstration, sure, but I attended the rally because I wanted to be seen as a citizen who was publicly, vocally opposed to the ever-escalating sensationalization of the news media. I’m glad that prominent media figures stood up to say that it needed to end. I’m devastated that not enough people heard that message until shots rang out in Tucson, and people died. I’m worried that not enough people have heard it yet.
I am surprised by some of my emotions: today, I don’t want this event to be about politics, but about the people affected. I know this is a foolish hope, as the tragedy can and does have meaning well beyond those lives, and the realities of politics are not something we can simply shut off and leave outside while we mourn. But I want people to remember that there are multiple families who have lost loved ones, who are sitting in hospital waiting rooms. And I want people to remember that there are always families struggling with the effects of violence and accident, that waiting rooms are too full of worried loved ones, experiencing tragedies that are also consequences of some of these larger societal forces. Because of my sister’s epilepsy and severe Salmonella infection, I have spent time in ER and ICU waiting rooms and in ICU rooms and other wards; I’ve spent time in the ER for an injury of my own. I don’t want anyone else to have to experience that.
Tonight, the families of the 20 victims are facing a potentially tough recovery from emotional and physical injuries. The people of southern Arizona have been shocked by this violence, and the nation is stunned. My heart goes out to everyone in Tucson, everyone connected to Tucson, and I wish us all time and space to grieve and heal, and I wish a rapid, full recovery to the injured, especially Rep. Giffords.
My prayer – if that’s the right thing to call this – is that we can respond to this devastating event not with more fear, not with insularity masquerading as community cohesion, but with the courage to stand together as an inclusive community, as a group of people who don’t necessarily agree with or like each other but who can face our fears together and work to build our future together anyways. In that work, let the memories of those lost and the recovery of those injured inspire us, to be lights in our lives instead of reasons to let the darkness in.
A few thoughts on US health care policy
Posted: September 30, 2010 Filed under: Politics | Tags: health insurance, pre-existing condition, preexisting condition Leave a comment »I was pretty young when I learned about the practice of health insurance companies denying coverage to individuals with pre-existing conditions. (I’m pretty sure it was before I hit my teens, but if not, I was somewhere around age 13 or 14.) My concept of how insurance companies worked was probably inaccurate at the time, but that was more or less irrelevant to my emotional response: panic at the thought of Lily not having health care, because her disabilities are almost all congenital, and thus, you know, pre-existing.
Over the past few days, I’ve noticed some comments on websites with discussion boards that argue that by not allowing insurers to deny coverage to people with pre-existing conditions, we as a society will encourage people – particularly the generally healthy 20-30 year old crowd – to forego insurance. These people will then “get sick” and demand to purchase coverage at the time they require medical services. My response to this is twofold: (1) if medical care weren’t so much more tied to insurance than ability to pay, and locked into a for-profit model, we might not be having this disagreement, and (2) given our current situation, and the fact that most of us who do carry health insurance now don’t use it all the time, can you please remember that there are babies who are born in need of care, and that it’s morally reprehensible that we as a society would consider promulgating a system of health care that would relegate these children to lives of unnecessary difficulty? I don’t know what simulations and survey data say about the likelihood of people giving up health insurance because they know that they wouldn’t get denied coverage should they end up with (relative) pre-existing conditions, but I know that even one family like mine trying to struggle with the human/humane act of caring for children who need even just a little bit of medical care? Can feel like one family too many. And while Lily’s needs might be pretty extreme – she needed anti-convulsants as well as major reconstructive plastic surgery and a shunt before her first birthday – when you consider that “disability” extends to scenarios as mundane needing glasses or a cane, there are a lot of families like mine out there.
Really – even small things, like getting glasses or leg braces or a walker, can have a huge impact on a child’s development and happiness. If parents have to fight the medical system, it puts stress on the whole family. A child’s minor medical condition might be correctable, saving precious dollars by preventing the need for treatment in or throughout adulthood, if that’s a concern for you-the-hypothetical-reader, to say nothing of the amelioration of emotional trauma. How many students underperform in school because they have undiagnosed vision problems? Learning disabilities? Cardiac or respiratory problems?
I’m not one to argue that we need to force everyone to get treatment for any perceived medical problem, and I’m not saying that we can’t pay for some or all of our own health care. I am arguing that for those who want treatment, it doesn’t make sense to let bureaucrats without medical training to make decisions about whether that treatment is accessible. (For the record, I really do wonder whether this would even be an issue if health care were as profit-driven as it appears to be, and if we had somehow avoided developing a dependence on insurance companies to mediate paying for health care. But I’m not sure how to resolve that situation without drastic measures.)
As a sibling, from the day I figured out the pre-existing condition clause, I sensed that some day it could cause problems for me, because at some point, I assumed that my parents would no longer carry coverage that included my sister. Now that I’m older, I know that there are social support systems that will help Lily get the medical care she needs, but I haven’t stopped assuming that at some point I might need or want to include my sister in my own health care plan. If we move towards preventing any individual from being denied medical insurance due to pre-existing conditions, we move towards a time when I won’t worry about being able to do that.
I’m aware that as a scientist, I’m probably expected to respond to a situation like this by looking at the numbers and making an objective, analytical response. But I’ve been a person for longer than a scientist, and my love for my sister sometimes means that I won’t take that approach. I see this as a moral issue rather than a matter of strict finances and statistics, and if that’s a purely selfish motive because of how personally I take the issue, so be it. There are actual people who are currently in need of medical care that they can’t get for reasons that seem obscure at best and downright inhumane at worst, and I’d love to see our national policy debates focus more on them than on abstracts and theoreticals.
20 years of the ADA
Posted: July 26, 2010 Filed under: Politics Leave a comment »The news show I was listening to on the radio this morning noted that today marks the 20th anniversary of the Americans with Disabilities Act being signed into law. I was just reminded of this by a post up at FWD.^
I was actually thinking about the ADA this weekend. I was visiting some friends in a nearby city, and we stopped at a fast food place to get some soft drinks, as it was super hot outside. The entrance was a double door. The right hand panel was labeled with the restaurant name and hours of operation; the left hand panel was labeled “ADA Door.” We proceeded to puzzle over this while getting our drinks. Was it a partial label? Was it some other abbreviation? The “small caps” typeface made it hard to be sure, especially since there were smudges vaguely suggestive of a recent change in label. I had passed the place earlier in the day and seen it and thought ADA probably meant *the* ADA, and mentioned this to the group. Confusion lingered, though, since – unlike almost every single accessible door I’ve seen in the past decade – it was not a powered door. A minute later, though, I saw people using another door that was located at the base of a very short flight of stairs, which we all agreed might mean that the “ADA Door” was really supposed to be an accessible door. One person mimed pushing the button that was missing as we walked out.
Earlier that day, I had been incredibly gratified that my companions had rushed to help a woman pushing a stroller (and herding a toddler) to get through an awkward door when she reached a building we were all trying to enter.
As s.e. smith observed in the FWD post, the fight isn’t over yet. Not by a long shot, I’d say. But today, I am pleased to know that there are people who are thoughtful and willing to help make the world more open, accepting, supportive, and accessible for everyone, including perfect strangers. Even politicians! 
Where is my sister’s agency?
Posted: June 12, 2010 Filed under: Day in the life, Politics | Tags: agency, disability Leave a comment »Lily was feeling like running her own schedule this evening when I called to exchange Sabbath plesantries with my family. She kept asking whether they could go for a walk, possibly to try to manipulate my parents into taking her back to her apartment. (She sleeps at their house every Friday.) For a variety of reasons, some we don’t understand, this gave way to the screaming she had been doing before that part of the conversation. Dad told her that the answer was no, because she was screaming.
Lily rejoined with, “The answer is yes!” And, y’know, repeated it a few times, for good measure. Then she chanted “yes” for still more beats. I was hard-pressed not to start laughing at how solidly she had challenged Dad’s authority, and with such clear language. Even if she was behaving poorly and wasn’t exactly in a position to demand good things. (Yeah, it’s got to be hard on all three of them that she’s got the stubbornness and drive for independence of both toddlers and teens, mixed in with the stubbornness that runs in the family.)
I’ve been struggling a lot recently with the question of my sister’s autonomy, agency, and voice, and my role in her life. One of the blogs that is in my RSS feed is FWD: Feminists with Disabilities.^ One of the points I have seen made there, and agree with very much: PWD have voices and can speak for themselves. It is our job to listen.
Which makes me wonder: how much of my writing her is violating this human respect? Does it matter that Lily can’t speak the words that she wants, or that she lacks the conceptual frameworks she needs to even access those words? Do all siblings have the same reasonable expectation of needing to be heard, even if their siblings’ disabilities may be radically different in scope and nature?
I mean, if Lily were only blind, I’d still want to be sure that my parents heard my voice saying that I wanted attention and love, just as any child would, and that Lily’s blindness shouldn’t supersede either her nor my general needs as offspring. I’d still want to be sure that I knew what the government expected of me as a sibling. I’d really freaking want society to know that their ill treatment, ignorance, mistrust, abuse, and fear of my sister affected me, too, even if those effects were incredibly different from the very direct negatives she experienced.
But my sister is not just blind. She has been deemed by the court to be incapable of self-care and self-determination. So I want my parents to know that I need and want their attention, but also that I need to be kept in the loop when it comes to legal, financial, and medical issues. (For the record, I have great parents, so I am.) I want the government to know that if something happens to my parents, I am the person who will be responsible for managing my sister’s care. And I do want society to know how their interactions with Lily affect me, but beyond the ill-effects of fear and prejudice: I need society to know that because of who and what they have declared her to be, Lily is reliant on me, and I damned well expect that I get what I need to be her advocate.
None of which really makes me feel any better about not being sure that my attempts at advocacy, sibling protectiveness, and vocalization don’t conflict with Lily’s rightful self-expression.
This is not something I will feel comfortable with tonight, or for a long time, I think. But I need to start talking about it, to confront my own fears, prejudices, ignorance, and privilege.
Quick post: the r-word takes some hits
Posted: May 26, 2010 Filed under: Media, Politics Leave a comment »You may or may not have read my post on Glee and my discomfort with it. Well, tonight I caught the most recent episode online. I’m still not sure how I feel about the show, but:
*SPOILERS BELOW*
There was this incredibly interesting scene where Finn and Kurt are having it out, because Finn is moving in with them (as his mother, Kurt’s dad’s girlfriend, is moving in with him). Finn says some really awful stuff that reveals some homophobia, and Kurt’s dad comes in and lambastes him. Aside from calling him out for using hateful language regarding sexuality, he pulled out some other examples: like not using “retarded” as a slur against a friend with Down syndrome.
Like I said, I’m still torn about whether this show is going to stay on my list of things to watch. But at least they made the effort to point out why retarded is not a word to be used as a casual slur.
*END SPOILERS*
After watching the show, I wandered over to my browser to do some web surfing. Lo and behold, I found an announcement about a piece of legislation that is moving through Congress. It’s supposed to remove the r-word from federal legislation.
I’m honestly not sure whether it’s entirely appropriate to do this – I’d like to have medically accurate terminology used when it’s appropriate, and if it’s appropriate, then by all means the fed should be able to use it. And the little synopsis makes me feel like the proposed bill is more lip service to political correctness than actual effort to eradicate troublesome language from government documents. (But I’m pretty jaded. Your mileage may vary.) That said, I’m pleased that even what could be simple lip service is moving forward, because it’s important to recognize any progress towards treating PWD as people.
My week in television and siblinghood
Posted: February 21, 2010 Filed under: Day in the life, Politics | Tags: Down syndrome, siblings with disabilities 2 Comments »Three items for thought this evening. All links should open in new windows.
Item 1: Down syndrome, Family Guy, Sarah Palin, and Andrea Fay Friedman
I’ve written recently about former Gov. Sarah Palin and the Rahm Emanuel episode. Well, it turns out that the animated show Family Guy got dragged into the fray by including a guest character: a woman with Down syndrome, who apparently claimed that she was the daughter of “the former governor of Alaska” (I think we can all agree this was aimed at Ms. Palin). As with everything in this post, I missed the original airing (hey, television and internet have been lower on my list of things to do after moving than many other tasks). I’ve actually not seen it yet, but what I have seen…was verrrrry interesting. I noticed some headlines about Ms. Palin speaking out about the episode of the show, but stayed away because I didn’t want to end up feeling even more frustrated with her behaviors. What I did end up reading was an entry on Huffington Post, in which the actress who did the voice work for the character responded to Ms. Palin’s comments. Turns out this woman, this actor, Andrea Fay Friedman, has Down syndrome, and – this will shock you, I know – didn’t think the show was offensive. (She went on to participate in an interview with the NY Times that I enjoyed. Turned out she had starred in Life Goes On, a show my family used to watch, and the source of Lily’s obsession with Ob-la-di, ob-la-da. Not that the whole family isn’t a fan of the Beatles, and we all knew it before then, but Lily likes that song partly for that reason. Regardless, I had forgotten that role of hers, because I haven’t seen the show in well over a decade.)
I was delighted. Ms. Friedman pointedly made the point that the former governor was using her son as a political prop, and that Down syndrome isn’t the dread diagnosis that the media has made it out to be. I watched one of the video clips linked from HuffPo, and Ms. Friedman talked about how her family had raised her to have both a normal life and a sense of humor. It was great. I loved that a member of the disability community was suddenly visible as a person with political, philosophical, and personal views that were legit and interesting and newsworthy (even if I disagree with the cult of celebrity that contributes to things like Ms. Palin being so often in the news to begin with). I was glad to hear that an actor who had accepted a role was proud of it, even if it used her medical condition as part of its humor, and that she said something so in sync with a post I just read on FWD/Forward: not every depiction of disability in entertainment media is absolutely bad.
Okay, okay, I was also laughing really hard at the image of Trig Palin being carried “like a loaf of French bread.” Poor kid – to be so young and so visible would be hard for any infant, I would imagine.
Edited to add: after I wrote this, I saw a clip of an interview with the show’s creator, Seth MacFarlane, on Bill Maher’s show Real Time. GOOD: The point that Ms. Friedman responded to Ms. Palin’s attempt to defend her by pointing out that she doesn’t need defending (to paraphrase). BAD: Just because you got that one right, that DOES NOT give you permission to make “retard” jokes. Mr. Maher? That you made the joke/comment the way you did tells me that you don’t understand why so many of us oppose the term.
Item 2: Alexandre Bilodeau’s gold medal
I’ve participated in some discussion this week on the media events surrounding Canada’s first home gold medal winner, Alexandre Bilodeau. I missed the initial coverage, but have been catching up. (examples: NY Times article here, and also here) Mr. Bilodeau’s brother, Frederic, has cerebral palsy, and I understand that he was invited by his brother onto the medal stand.
Now, I can’t speak for Mr. Bilodeau, as all of us sibs have our own experiences. However, having recently achieved my own major victory of a PhD, I felt a lot of emotion when hearing about this. Part of me felt that it was such an obvious thing to do – to celebrate with someone with whom you have a unique relationship, whatever that might take. I couldn’t do that with Lily, because she can’t really travel and wouldn’t have been able to tolerate the silence that the audience maintains. That said, I dedicated my dissertation to Lily, and mentioned her at the close of my acknowledgements section in my public defense presentation. (I had put her picture on the slide, as my parents were in the audience.) She’ll never be able to read it, but many others will. Maybe the recognition is also a signifier of the fact that the sibling relationship can dominate us sometimes, and that not recognizing the sibling feels strange; I know I felt like I had to say and do something to keep Lily in the moment, even though it was mine. It wouldn’t have felt right to have such a momentous occasion happen without her. We don’t always get along, and right now we’re chafing against each other a bit, but Lily was also always interested in what my schoolwork and homework were about. (Also, for those who caught the Star Trek stories – Lily learned to say “DNA” from watching Dr. Crusher. So sometimes we “talk about” DNA, although this often leads Lily to want to examine me, which usually ends badly, as dramatic television can’t really be boring and all of her ideas about sick bay are based on that. Plus, she has had some uncomfortable experiences with doctors, herself.)
Item 3: When TV tries to get disability issues right
I’m not the sort of person to subscribe to cable television, so I don’t always know about the latest hip shows that aren’t on broadcast channels. One show I’m sad to have missed at its start is the show Burn Notice, which I saw for the first time on New Year’s Eve, stuck in a hotel room with few television channels. I loved it right off the bat, partly because I had just seen Army of Darkness for the first time and Bruce Campbell is on the show, partly because it’s funny and has lots of explosions, and partly because Fiona just kicks ass. Anyways, tonight I was catching up on episodes that are available online through Hulu, and ended up watching the episode entitled Noble Causes. Some of the plot only makes sense in the larger story arc, but what is relevant here is that the client being helped out by freelance fix-it/former CIA man Michael is motivated by his desire to protect his cousin Dougie, whom he describes as “slow.” (He’s never given a named diagnosis, but the writers tried to imply developmental disability.)
**SPOILERS BELOW** I want to take a moment to discuss this: I was mostly pleasantly surprised, but I’m not sure they got it quite right. I admire the idea that disability can be shown with some realistic features: Dougie is part of a program that helped him find a job, not unlike some of the activities in which Lily has been involved. It’s implied that he lives largely independently of his family (in the sense that he’s self-directed, not that he’s alone) and that his cousin loves him and feels protective of him. Doug gets trapped in a plot by thieves, who are shown to be Very Bad People partially by their taunting behavior and their liberal use of the r-word. (I have to say, I was very affected by Fiona wanting to charge in with guns blazing, as her character is wont to do, when she saw this. If people other than family and friends know how hurtful that kind of thing is…well, that’s good for us all.)
Then again, the big emotional conclusion ends up bringing us full-scale into the Noble PWD caricature. The cousin, Sugar, relates a childhood story in which Dougie, despite the taunting given him by Sugar, comes to his aid, defending family above all else. What tripped my circuits: if adult Doug can infer that marines and other members of the military are engaged in defense and fighting for good, there’s a good chance he was sophisticated enough to differentiate real family ties from the sort of relations you can do better without. Not that the character isn’t potentially realistic, but it felt too much like “PWD Has Better Morals Than Everyone Else, Because of Those Disabilities.” Frankly, it also disturbed me that “Dougie” was the name used here. The nickname is infantilizing, and it just isn’t true that all adults with disabilities are childlike or innocent. (Lily may not be able to add more than one to any number, but she for damned sure isn’t a child.) So I’m not sure whether I think the way the character was written was actually okay, but I’m willing to give the creative team credit for not resorting to the cheapest and easiest plot devices.
Words, politics, relationships, people – why I dislike the word “retarded”
Posted: February 8, 2010 Filed under: Day in the life, Politics 1 Comment »Sweet Machine over at Shapely Prose just posted a really great essay^ on the recent news story about Rahm Emanuel’s unfortunate usage of “f*ing retards” and the response of Sarah Palin (and Rush Limbaugh). I urge you to read that, and to read the full text of the TigerBeatdown^ post by Sady that she quoted.
I know I have a comment in my “On disability” page about the word “retarded.” But…I’m going to take a minute to revisit the issue here.
A lot of people I know use the word, and use it as a slur, rather than as a medical descriptor (or to explain why it’s a slur, or other such usage in which it’s the object of conversation rather than an adjective). People I otherwise care for very much use it. Now, I dislike certain confrontations, especially when I’m already stressed out, and let’s face it, finishing my doctorate was a stressful time. (Stay tuned for a discussion of that!) I’ve left conversations feeling unsettled and regretful that I didn’t object to the slur. Sometimes I’m afraid to damage relationships. Sometimes I just conceal the hurt at realizing that my friends and acquaintances don’t really associate Lily with the politics of disability, understanding that their language can and does hurt me and would hurt her. Sometimes I give in to my fears of being a social outcast when the usage occurs in groups. Not good reasons, and I’m trying to work on being more open about my feelings on the matter.
Despite all of that, it didn’t really hit home to me just how much it upset me to hear the word until a week or so ago, though. In my new job, I share an office with someone with whom I get along well; we haven’t known each other very long, but I think we’re going to be good friends. As you may have noticed from some of my other entries here, I’m often hesitant to tell new people in my life about Lily. That conversation is often a risky one for me, because I can tell a lot about how a person will relate to me based on their reactions to information about her. Not to mention the fact that the story is complicated and distracting and just not my favorite thing. I mean, it’s who she is, but Lily is so much more than her physical self, you know? It may be necessary to explain that she’s blind to make someone understand how funny it was to have her throw a beanbag directly to my dad, say, only she caught him off guard and hit him right in the head. Or something like that. (Beanbag battles are definitely a serious event in our family!)
But I digress. I had actually gathered up the nerve to talk about Lily with my new coworker, and he had dealt with it well. (In other words, he didn’t press the issue, and asked reasonable questions.) And then…then came the conversation, a couple of weeks later, in which he was trying to voice displeasure with something that bureaucrats had done that irritated him. He actually tried to come up with another word, but finally landed on retarded. I sighed, and thanked him for at least trying to avoid it. Which of course triggered the look on his face that I could only interpret as “Wait, you’re not one of those people, are you?,” accompanied by a less painful fumbling of words. I should say that I was trying to give him some credit here, as English is not his first language, and his slang usage reflects that, and I am willing to grant that he probably didn’t really understand how strongly negative it is. Even so, I surprised myself with the amount of harshness in my voice when I explained to him that I know the meaning of the word, and that most people in this country use it solely in a derogatory manner. I also noted that it wasn’t particularly enjoyable to me as an older sister, and that I have indeed heard jokes or attempts to cover fear with humor in which Lily was referred to as a retard, or as retarded. I think he really listened to me, but I don’t know how much of an impact it had on him. Time will tell, I suppose.
I guess what it comes down to, for me, is what one of my friends says: words mean things. It’s good to remember that, and to use the words you want, especially since it lets you use words that don’t do harm. It’s hard sometimes, but I have to believe that it’s worth it.
Ignoring the “others”
Posted: August 19, 2009 Filed under: Politics | Tags: disability, otherness Leave a comment »In case you’d missed it, PETA apparently has a new ad campaign that attempts to conflate vegetarianism and weight loss. I find it offensive – and I’m not the only one. Kate Harding has a great post about it on ShapelyProse (new window) about how the ad talks both to and around the audience.
There was something familiar to me about some of what Ms. Harding said, and it finally occurred to me that it was the idea in the title: people ignore those they’ve classed as “other.” I can’t tell you how many times people have asked me or my mom questions about Lily, while Lily is sitting right there. Granted, some questions are inappropriate to ask Lily (or of us) or were beyond her ability to articulate when she was very young, but she’s perfectly capable of talking about, say, her age.
Frankly, it shocks me to see people ignore her when they should know better, or even fail to account for her possible intelligence and humanity. For instance, Lily just visited her neurologist this week. This doctor has one of the worst offices in the world, it seems, as my family always has problems when they try to schedule a visit or actually meet with him. Anyways, Lily was restless after being stuck in the waiting room for half an hour (surprise, surprise), and was in and out of her wheelchair in an attempt to be more comfortable. Mom told me that near the end of the actual visit (I’m guessing the kid was DONE with being there), Lily got into her wheelchair by herself. Apparently, the doctor was incredibly impressed by this. (Mom’s comments were that he seemed to treat it as if it were her crowning achievement for the day; I would rank not having a temper tantrum there higher. [/snark]) How could her doctor not understand that Lily is strong, capable, smart, and often motivated to get up and do stuff? (I will admit that he has likely seen very little of her during office visits, and his other exposure to her is when she’s hospitalized, and she’s not exactly bouncing off the walls then.)
It’s a tragic pattern to observe. I caught part of a television show the other day that was partially set in the civil rights era south, and the treatment of non-whites by whites in one vignette was the same: the whites, having other-ized the black woman, talked to each other as if the young woman wasn’t there. It’s a subject treated as a joke in popular culture, too; how often have we all seen or heard about people shouting to communicate with the blind, who then object that they’re blind, not deaf? Or the elderly who decry similar behavior, saying they’re old, not stupid?
Otherness is scary because it’s so often implicitly dehumanizing and denigrating. (Maybe always? I’m not an expert on the academics.) Perhaps it’s rooted in fear – especially in the case of disability, fear that “I could end up like that,” but instead of tackled with understanding, mocked, in an attempt to dispel the fear with minimal effort. (Treating the symptom instead of the disease, in a way.) Hopefully my eventually getting a job as a professor will put me in a position to help educate people away from their fears and into a satisfying life…like the one my gutsy, motivated sister leads!
Recommended reading: “On death panels”
Posted: August 17, 2009 Filed under: Politics | Tags: disability, health care Leave a comment »There’s a really impressive essay “On death panels” (a term being tossed around in the current American debate on healthcare) that was recently posted at the blog ShapelyProse. (Yes, I know the author – who has commented here – but it’s not just my bias; it really is a thought-provoking piece!)
Part of my reaction to this post was deep sadness with a tinge of fear: when it’s time for me to assume responsibility for Lily’s medical care, how will I know that I’m doing the right thing? She is incapable of, say, understanding what a DNR order is, or what end-of-life care means. That’s just keeping to the topic of the linked post; there are so many facets of everyday life that I am forced to conclude are impossible for Lily to articulate. She just saw her doctor yesterday, who thinks the bacterial infection that started a couple of days after her dental work is really a bad sinus infection. Apparently, the doctor asked her if her head hurt – how frustrating that that question is a major diagnostic tool in this case, particularly for a young woman who may not fully understand the question! That said, my mom had seen her pressing her hand to her forehead the way someone with sinus pressure might do, so there was additional information to usee in this case.
It’s hard enough dealing with the health insurance and medical care system as they exist right now in the US. Doctors are suspicious of my parents (and will be of me) because we know so much about Lily’s medical conditions – more than many of them do. (This is relatively common among families where one person has a medical condition, I think – we try to learn as much as possible so we’re capable of helping our loved ones!) The system is based on profit, so caring for a human being who was born with major medical needs kind of ruins their business model. My parents have fought long and hard to make sure Lily gets the services that she’s legally owed. But there aren’t many good options to support the entire family. (For years, my parents didn’t use the respite care that the government was willing to pay for, because so many of the providers were really bad matches for Lily.)
I would love to see a system that helps all patients – pre-existing conditions or no – access safe, reasonably priced, medically reasonable care, including mental as well as physical, including dental. I really hope that the politicians who are in a position to help us achieve that vision see the basic humanity of it, and can leave the politics part of it behind.
But I’m not holding my breath.
Updated, Monday, August 17, 2009, 8am
I woke up this morning to find an intriguingly-titled op-ed in The New York Times website: Health Care’s Generation Gap, by Richard Dooling. (opens to new window) The title and illustration at the top made me wonder if someone were going to reintroduce the idea that a lot of us don’t just deal with elder care (parents and grandparents), but care for our children and siblings, too – simultaneously. What I read instead started strong – stating that not all medical procedures can even help patients, which seemed to me to be prime evidence that SweetMachine is not alone in not finding support for her mother’s care. But it ended with the horrific implication that just because one has reached an advanced age, one is not entitled to health care to ensure continued quality of life. Mr. Dooling seems to be saying that older adults can vote, so they vote for governmental assistance for their age group, leaving children to depend on their parents for a political voice – which isn’t unfair – but the message behind his words is that this type of action has resulted in the highly inflated spending that is one symptom of our struggling health care system.
I have mixed feelings about the abundance of advertisements on television for erectile dysfunction treatments. I dislike that Lily’s seizures remain poorly controlled after trying most of the anticonvulsants in existence, vaccine development suffers in part because it’s not profitable, and almost no truly new antibiotics have been developed for decades. But I realize that quality of life is important for everyone to have – and surely, for humans, sexual health is an important part of that.
I don’t begrudge seniors acting in their own interest, Mr. Dooling, as I expect to do the same someday. We all age and die – we all deserve to live fully and with dignity as we do so, and it behooves us “younger” folks to support our elders. You may not see the value in a life of 80 or 90 years being extended or made more comfortable, but as a scientist, I hope we can learn as much as we can from those who have seen the world change – the lives of the elderly are a rich first-hand source of knowledge, and our fear of death and dying is likely the only reason we don’t take advantage of that in this society.
Also, how can you claim that rationing is “imminent,” when so many of us already feel the pain of waiting for care because demand outstrips supply? And that supply is spread amongst those who can pay before those who can’t?
