Ferguson and a lesson in empathy

For days, I felt blank about the events in Ferguson and New York City — the non-indictment of officers responsible for the death of Michael Brown and Eric Garner, the protests.

I had heightened senses of anger and grief that, strangely, seemed inexpressible.

Yesterday that grief broke open: I remembered the 2013 case of Robert Saylor, a man with Down Syndrome killed by police in a Maryland movie theater because he would not leave after a showing of “Zero Dark Thirty.” Saylor, a white man, died as a result of chest compression, just as Garner did.

For those who don’t know, persons with Down Syndrome can be excruciatingly stubborn. Saylor wouldn’t leave the theater because he wanted to see the movie again. He was 26 and accompanied by a state-provided respite aide (he lived at home, though). That’s a low-wage job. The parents had provided money for one showing, and the aide didn’t have a way to pay for a second set of tickets. So Saylor hoped, wanted, desperately to see the show again. (Saylor also feared being touched.) His mother was on her way to help when he was murdered for resisting arrest—his death ruled a homicide. As with these other cases, a grand jury failed to indict the officers.

Protesters face off with police officers in Ferguson, Missouri the night the grand jury chose not to indict Officer Wilson for Michael Brown's death.

Protesters face off with police officers in Ferguson, Missouri the night the grand jury chose not to indict Officer Wilson for Michael Brown’s death. ©Photo by Chris Andoe.

I get most of my news online. The majority of my Facebook friends posted links to progressive analyses of Brown and Garner’s cases, as well as articles on the difficulty some white people had understanding the grief and outrage that many African-Americans felt. The articles argued that our “privilege” prevents us from identifying with the often-veiled racism that blacks experience on a daily basis. When other white people are around, the articles said, those whites who are biased are suddenly on their best behavior.

I agree with these articles, although the word “privilege” makes me uneasy. As a former academic, that word feels useful as an analytical tool by professors; however, at the level of ordinary life, the term makes people defensive, shutting down discussion. One commonplace of U.S. life is that most Americans think they’re middle class when they’re not. Most Americans probably don’t think they’re privileged, even if in some ways they are—which is why identifying privilege feels so urgent to many on the left. Yet American society is complex and any given American lacks “privilege” in any number of ways.

Stepping back for a moment, the overall notion behind the concept of privilege is that you are unaware of the benefits you receive simply because of a group (race, gender, sexual orientation, economic) you inhabit. For example, you’re a white man walking home at night with your hands in your pockets through your white neighborhood—after dark. You arrive home safely. Now you’re a black man walking through the same neighborhood with your hands in your pockets. A police car pulls up: someone saw you and called the cops because you might have a gun. You’re taken downtown because they “can’t be sure” it’s you on your driver’s license. But you’re a prominent businessman, very wealthy, and you sue the ass off the police. If you’re a woman of any race, you’re probably not walking alone after dark if you can help it. Privilege and who has it and why can turn into a shouting match over who has the most or the least.

Back to Ferguson, it is true that white people often think all Americans are equal, that each of us has an equal chance to take part in the American dream. Personally, I feel keenly the startled one-step-back response, and veiled resentment, that I’ve received when I point out the advantages possessed by able-bodied people. I am not disabled, but my son Robert is; by a disease so rare he’s one of nine cases worldwide.

Dystonia 16 has left my son without the ability to move (much at all), speak or eat. He’s intelligent but locked-in, without the motor function necessary to use most communication devices. Over the 16 years he’s been disabled, my trust in government and society has radically diminished. The state, the school system, public and private healthcare—none of these entities has had his best interests at heart. I truly believe that Maryland Medicaid doesn’t care if he lives or dies.

So while I haven’t experienced biases directed at people of color, I do understand societal prejudice, which, in the case of disability, is maddeningly open. If I had a dime for each time I’ve encountered a variant of “disabled people shouldn’t even be alive,” I could retire. Dimes for “people with disabilities make me uncomfortable” would make me rich.

I’m friends with other parents of disabled children, so my Facebook feed regularly fills with stories on the abuse and murder of people with disabilities: children left in classrooms during fire drills because their paperwork didn’t specify their method of removal from a burning building (seriously); systemic patterns of abuse at institutions designed to “house” them that result in their deaths; people with disabilities killed by their own families; children denied life-saving operations because their quality of life is considered low, and even worthless; parents fighting for necessary medication not just with private insurers, but with the state.

I know your pain, parents of children with skin darker than mine. I really do. My son faces mortal threats every day. And while my fears aren’t identical to yours, do they have to be?

If you read this and experience that sense of one-step-back resentment — that sense of “sure this is a problem, but this doesn’t describe me” — remember that “privilege” isn’t always the best way to talk about injustice, and you aren’t being accused of it. Each of us may be both privileged and non-privileged in ways, large and small that aren’t apparent behind the wall of skin color, an able body, or any other big impersonal category.

I prefer the rallying call Black Lives Matter. Those of you who are white and don’t know how to respond to the long history of injustice that black men face, try to think empathetically: How would you feel if your children or siblings or parents were treated similarly?

Every step toward justice is a step for all, and I hope raising consciousness about these crimes against black Americans helps whites realize that black lives matter, and helps all Americans realize that all lives matter.


Jeneva Burroughs Stone is an essayist, poet, blogger of the rare & unknown, practical g/i nurse, interpreter of EOBs, queen of medical-necessity letters, unlicensed PT, knowledgeable wheelchair mechanic. She has a PhD in Renaissance literature with a focus on gender and sexuality, has taught high school and college students, and worked on Capitol Hill and as an editor in higher education policy.

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53 Responses to “Ferguson and a lesson in empathy”

  1. jenevastone says:

    Zorba, I am glad you are in the world. Thank you on behalf of my son and his friends for your efforts in the Maryland public schools. Peace be with you.

  2. jenevastone says:

    I’m sorry that you felt this way, Gary. We had a complex and difficult conversation; however, you did add to this conversation. While the back and forth was hard, I do appreciate your taking the time to write. Perhaps it began in too combative a manner on both parts all together. Take care.

  3. jenevastone says:

    That Jackson, Sharpton and others think that black lives matter only if the killer is not black strikes me as probably untrue and insulting to both of these men who, despite faults, have worked mightily for civil rights. Yes, they’re combative, but I doubt they’re that callous and unfeeling. You seem to be concerned about issues I did not discuss–what you’re talking about is a tangent. At any rate, they are advocates with organizations speaking on behalf of those organizations that, yes, do purport to represent African-American issues. But at the level of individuals, it seems unlikely that every African-American might feel Jackson or Sharpton, et al. speaks for him or her. I mean, Af-Ams aren’t all Democrats, for example. There are lots of Af-Am conservatives. And many diverse opinions, just as there are among women in general or whites in general. I appreciate the time you’ve taken to clarify your views and concerns, but all I can say in response is that I don’t see nor do I want to see America as an “us” vs. “them” society.

  4. jenevastone says:

    I felt I did not get an opinion from you–you offered some accusations, some of which were directed at me, that didn’t have the clarity of an opinion (backed up by reasons). Perhaps you were simply trying to be brief. I don’t follow your argument, nor how it connects to my piece, which did not discuss the upcoming elections. About the bumper sticker, you seemed to be joking.

  5. Bookbinder says:

    If you can’t deal with a difference of opinion, stop writing opinion pieces. I am not marketing anything and I stand by my concern for the political impact.

  6. Zorba says:

    Thank you, Jeneva.
    As a retired special education teacher who had students who were severely and profoundly disabled, I can empathize with your pain regarding your son. It’s bad enough that you have to deal with your son’s profound problems on a day to day basis, but to have to deal with the idiots who think that people with disabilities make them uncomfortable, or even worse, those who think that they “shouldn’t even be alive.”
    I had many people who asked over the years why I bothered teaching the disabled, when I could be teaching “normal” students. I got tired of answering them after awhile.
    After I retired, I became a parent advocate for special education students, and I am still amazed at the absolute lack of understanding of the so-called professionals who represent the school districts at the IEP meetings I attend.
    And I happen to live in Western Maryland, so I am more than familiar with the Ethan Saylor case. It should not have happened.
    PS. Having said all this, I do not agree with commenters who have basically said that, if you don’t have a direct experience, you cannot “empathize” with others.
    I have a beloved younger brother who died of HIV-AIDS. He was one of the early ones. So, yes, while I am not gay myself, I can empathize with those who lived through this. (Not to mention a number of friends we had when we lived in San Francisco, who also suffered and died of this.)
    People are just people. And I think that we can empathize and support others who are not “exactly like us.”
    I just wish that more people would be willing to do this. It might be a better world if they did.
    Namaste, my sister.

  7. Tatts says:

    They DO have unelected spokespersons and leaders, as does the gay community and the medical community and the Hispanic community, and…
    And those are the people (along with elected representatives) who are failing (and deliberately misleading) them: NAACP, Jesse Jackson, National Urban League, Al Sharpton, the clergy, etc. They are silent in the face of the carnage in the black community, but suddenly find their voice when they can point the finger at an enemy outside.

  8. jenevastone says:

    You need to go to bumper sticker school: that’s a little clunky–no ring to it. So I’m not planning on marketing it, but I hope YOU can retire on those sales.

    Thanks for the tip about the coming political apocalypse. I’ll stock the fallout shelter with canned goods this week.

  9. jenevastone says:

    I’ll take a look when I have time. Thanks.

  10. jenevastone says:

    Yay! At least we’ve got that point settled.

  11. jenevastone says:

    Actually, I think my position is clear: mutual accusation leads nowhere. I didn’t saw it was OK for African-Americans to point a finger outside their own race. In fact, that someone like Robert Saylor can be killed by police helps to demonstrate that while black men may bear the brunt of police brutality, if police are killing helpless people with Down Syndrome (and they are recognizably disabled) when the man’s mother has been called to help resolve the situation, maybe the police have a problem.

    I have no idea what you mean by your rhetorical question alert. I was the one who posed that question to you.

    You’re talking in big sweeping statements as though all African-Americans in Philadelphia, to take your example, belong to some sort of separate community that has unelected spokespersons and leaders that they can all agree on. Their elected representatives serve on the city council as part of the entire city of Philadelphia, and as delegates to the state legislature. They don’t have to solve problems on their own, they’re part of a democratically elected government and the rest of the representatives from other parts of the city and other districts are supposed to work WITH them to solve the area’s problems TOGETHER. That’s what representative democracy does. It doesn’t tell everyone to go off and solve their own problems. If you don’t want to live in a democracy, there must be another country that will take you in.

  12. Tatts says:

    I agree with your second point about police departments reducing unwarranted violence. But it’s wrong to limit it to “against members of racial minorities.”

    I also think you (and certainly the people leading the protests) may be missing the forests for the trees. Last year there were 3,383,249 units dispatched by the police in Philadelphia–a city of 1,500,000+ people (units dispatched obviously includes cases of multiple cars sent to a reported crime). They attended to 165,870 crimes (that does not counting curfew violations). 767 cops were assaulted during those incidents, and 212 of those were assaults by weapon.

    Those numbers are probably typical for most cities. Now, put those numbers against the numbers of “unwarranted violence” by the police. The percentage is infinitesimal.

    Also remember that these interactions aren’t random. In the 3 that are in the news now, each of those people was responsible for the police interaction in the first place–blocking traffic, brandishing a firearm, and illegal sales of cigarettes (by a guy with 30 prior arrests). Two of those problems were called in to 911 by citizens; the police aren’t randomly attacking people.

    I am NOT saying that people deserve to be killed this way. But I’m saying that the rate of such deaths is incredibly low in the full picture, And I am saying that if you are resisting arrest, attacking a cop, brandishing a firearm, you are playing a huge role in whatever happens to you. The fact is these people put themselves in harms way and it ended very badly for them, and they share a large part of the blame.

    Life isn’t perfect. It is not possible to eliminate all such events.

  13. Tatts says:

    “It may be that individual shootings/violent crimes seem to be chronic and these others feel isolated–yet they’re just as regular and kill a lot of people.”
    No and no. They are not just as regular (38 so far this year) and they do not kill a lot of people (24 this year). (Both figures exclude 2 suicide-only incidents.)

    “As for the issue of holding African-American communities accountable for crimes in which the perpetrators and the victims are of the same race, doesn’t that seem unfair? ”
    How is it unfair to hold the African-American community accountable for the extreme amount of violence within its own ranks while suggesting that it’s okay for them to point the finger at other people outside their race? Do you not see the hypocrisy in that?

    Rhetorical question alert: Does the value of someone’s life vary based on the skin color of the killer?

  14. Bookbinder says:

    So, the bumper sticker is “Make the world safer for criminals and more dangerous for cops.” Gonna be million seller. Every candidate for office is going to adopt it. And in 2016 Democrats are going to lose every state in the union and be wiped off the US map. Blacks suffer from 6 times as many homicides as whites, and since it’s a same race crime, blacks commit 6 times as many homicides as whites. One would expect 6 times as many arrests, prosecutions, convictions and incarcerations, and, yes, six times as many mistakes. Yes, I empathize. But, Lordy, get a grip on.

  15. GarySFBCN says:

    For obvious reasons, I won’t be posting anymore on this thread. But Jeneva, did you see this on CNN? It looks like something that may interest you.

    http://www.cnn.com/2014/12/04/opinion/perry-garner-disability-race-intersection/

  16. FLL says:

    Not only rude, but a Pavlovian reaction to any perceived opportunity to insult people.

  17. GarySFBCN says:

    “. . .and then call her a racist and worse. . .”

    I never called Jeneva a racist. That is hyperbole in the extreme.

    Saying her essay “masks the underlying” racism is NOT calling her a racist nor does it imply any mal intention. Saying that she is “well-intentioned but somewhat clueless” about racism, was, in retrospect, rude and probably incorrect, but it surely in no way can be construed as calling her a racist.

    But now that you’ve written that, let me state that I do not think that Jeneva (or anyone posting on this thread) is a racist.

    Seriously.

  18. jenevastone says:

    The questions you’re asking about Philly politics, communities and crime are above my pay grade–I don’t have the access or knowledge required. As for the issue of holding African-American communities accountable for crimes in which the perpetrators and the victims are of the same race, doesn’t that seem unfair? Mass murderers (shootings, mostly) and serial killers tend to be white men–their victims are mostly other whites, but not exclusively. It may be that individual shootings/violent crimes seem to be chronic and these others feel isolated–yet they’re just as regular and kill a lot of people. I mean, whatever the white community might be, no one’s asking for an answer about school shootings from someone who might represent us. I think we’re all responsible for maintaining our larger communities and cities and preventing a breakdown into smaller units to locate accountability, which may or may not be just.

  19. FLL says:

    Her critics are evidence of why so few communities on the left have been successful IMHO.

    I sometimes notice obnoxious sorts on the left (as well as the right) who are simply looking for any convenient opportunity to insult as many people as they can. Their goal has nothing to do with effecting any positive change and everything to do with satisfying their infantile desire for negative attention.

  20. Houndentenor says:

    And unfortunately we don’t have a media culture that wants to have intelligent informed discussions. What they want is to put on the extremes and let them yell at each other for a set amount of time and then pretend they were fair in their approach. We need to have this conversation but it’s going to have to happen somewhere besides the cable news media.

  21. Houndentenor says:

    Exactly. This attack on anyone who isn’t 100% “correct” on an issue is seriously holding us back. Note: it’s not the majority of a group that doesn’t the attacking. Just a few. But the result is that people who are mildly sympathetic to that cause throw up their hands and walk away. That’s no way to make progress. I have seen this a lot on trans issues. Pushing away people who aren’t anti-trans but don’t quite get the issue is no way to build a coalition that gets us to a majority. And frankly gay groups haven’t been any better. In fact we only got to 50% support for marriage equality because the anti-gay spokespeople were so openly hateful. We didn’t win so much as they lost. We really ought to learn from that but I’m afraid that the left, like the right, is too obsessed with ideological purity to care about such things as getting something accomplished. If it’s more important to be “right” than it is to be effective you’ve already lost.

  22. FLL says:

    The data in your second paragraph is accurate, but you may come to the wrong conclusion, namely, that police departments needn’t worry overly about improving their record of unwarranted violence against members of racial minorities who are suspects, and even those who are not suspects at all. I offer two reasons. First, black criminals are not paid a salary by taxpayers to commit crimes, whereas police officers are indeed paid a salary to do their jobs. Second, black criminals are sent to prison for their crimes (including murder), whereas police officers invariably are not.

  23. We are talking inside our bubble. And I fear that the current debate, or protests, are doing little to convince the middle because they’re based on a premise that we all “get it” already. I don’t think everyone, even those with good hearts who are in the middle, agree at all on the lessons of Ferguson. But I also fear that there’s no way to have that debate. Look at the reception Jeneva got here writing a sympathetic, supportive essay about these larger issues? Now imagine the reception she’d have gotten if she said she was in the middle on Ferguson and wanted to talk about that? She’d have been ridden out of town on a rail.

  24. Bingo. A large part of the reason I got involved in man progressive causes, and now have a great desire to help people and causes around the world, is because I came to terms a long time ago with being gay. And what I was going through, what I saw my gay friends going through, opened my mind to what others must be going through — other races, women, people from different lands, and more — through no fault of their own. That’s the point of this issue, and that’s why I published it. Jeneva makes a wonderful point, and does it deftly. Her critics are evidence of why so few commuities on the left have been successful IMHO. If you’re going to eviscerate your allies for agreeing with you, then you stand little chance in convincing those who don’t.

  25. You are being incredibly rude. If you disagree, disagree. But don’t go accusig someone, who came here to discuss Fergson and her own personal experience raising a child with a severe, almost-unknown disability, and then call her a racist and worse because she’s sharing her experience in an effort to expand all of our mind, and hearts, to all of these issues. This is just incredibly inappropriate.

  26. Dear Lord.

    “In my opinion, this essay masks the underlying racism that has resulted in the deaths of so many black men, because ‘me too'”

    In my opinion, your response masks the underlying animus and arrogance that has made so many communities so ineffective on the left over the years. We gays have almost won our issues, and it wasn’t by attacking people who talking about “feeling our pain.” It was by welcoming those people.

    Your comment is incredibly rude.

  27. As to your first point, yes and no. First, for the record, and I’ve told Jeneva this, I find the word “privilege” to be counterproductive. Those who don’t know the usage think it means you’re telling them they’re somehow rich or upper class, so they dismiss it. Those who know the usage, know that the word is often used by those intending to stifle the debate, to shut down any response from those who may disagree.

    Puttig that aside for a moment, I think a key part of the notion of “privilege” is in fact that those who have privilege (and we all probably have some privilege vis-a-vis someone else) don’t realize it. It’s the reason straight people, once upon a time, and still today in some regions, think gay people are “flaunting” their sexuality when they, for example, put photos of their spouses or boyfriends or girlfriends on their desks at work. No one would think a straight person was flaunting it when they put a photo of their spouse on their desk. But when a gay person brings up the fact that they’re gay, often people think they’re bringing up something “deeply private” and perhaps inappropriate for the venue. So, yes, IMHO, a key component of privilege is those with privilege not understanding the privilege they have. Perhaps it’s not part of the definition of privilege, but it is part of the problem of privelege.

  28. Tatts says:

    In Philly, 80% of shootings and 85% of murders are by black men (overwhelmingly young black men, who comprise about 3% to 4% of the population).

    As to whether anyone deserves to have their death discounted–that goes to my core frustration with the demonstrations. There were no demonstrations for any of the 200 people murdered this year by black men in Philly (out of 235). The black community (and its leadership on the local and national level) is silent on this issue. It’s only when they can point the finger to someone outside that they seem to be concerned.

    A 3-year old girl was killed in Philly this summer, caught in crossfire of a shooting while a relative braided her hair on the front porch of her home. A man sitting in the back seat of a car at a red light a block away took a bullet to the brain in the same incident. And all we heard was crickets from the community. The absolute hypocrisy is what I find so maddening.

  29. GarySFBCN says:

    Thank you for your thoughtful response. It saddens me that there isn’t a good support structure, adequate funding and strong research for your son’s condition. That is what we get living under a for-profit healthcare system that measures success in savings/profits and not in health outcomes or in providing services to people in need.

    While I do believe that your experience with ‘ableism’ and my experience with racial prejudice do provide us with a good understanding of what it is like to be the target of ignorance and sometimes hatred, it does not provide us with any understanding of what life is like after decades/centuries of institutional racism. For example, much of the poverty among black communities was engineered by policy that prevented many of them from participating in the greatest ‘wealth builder’ for the middle class in US history: Home ownership via the “GI bill.” Not having a lot of choices and often moving to decaying urban environments that were newly abandoned by whites who were buying homes in the suburbs, and then seeing government funding for services expand in the white suburbs while they were decreased in those urban environments has created cultures of hopelessness and despair. Dr. Camara Jones created a wonderful allegory called ‘The Gardner’s Tale’ that illustrates the three faces of racism: Institutional, individual and internalized.

    Anyway, back to your post. I still do disagree with you about discussing privilege. Its existence is real and understanding that is critical for institutional change. I do understand how a white man struggling to pay bills even though he has two nearly-full-time jobs may not feel his white and mail privilege. But I’m not asking that overworked man to develop policies to change the culture of police departments.

    Regardless, there is one change that spans concerned communities that we can work for: Moving police away from using deadly force unless absolutely necessary. They have many tools available – tasers, pepper spray, etc, and yet too often they resort to guns with a shoot-to-kill mentality.

  30. Houndentenor says:

    I saw an interesting blog post (via facebook) about what white people can do. I think a lot of us are at a loss as to what to do or say, especially as these cases seem to be coming one after the other. What the fuck is going on and how can I make it better? I feel like talking about it isn’t getting us anywhere, especially as we are mostly talking inside our own bubbles of people who already agree with us? Is there someone who could talk to the half of the country that doesn’t get it and explain it to them in a way that will resonate with them?

  31. jenevastone says:

    Well, I was told my example was a bad one for just the reason you articulated; however, for many reasons, it was too late to change. I don’t really agree with you. I don’t come at this from a cohort/exclusionary perspective (see my response to GarySFBCN below), but from an individualist/inclusionary perspective. So your argument doesn’t resonate with me–I’m glad police didn’t take any lives in Philly this year. I just can’t treat “black people” as an undifferentiated mass. Individuals fear violence, among other sorts of attacks. Why does any individual deserve to die or have their death be discounted simply because someone adds up the numbers one way under a certain set of suppositions and creates a cohort that appears to take the blame? How does the 200 persons killed by black men fit into the 1,128 shootings? Who did the other 900+? Empathy is a way of relating individual to individual, so it precludes a cohort perspective. White collar crime probably affects more people, but is rarely punished–what gives?

  32. jenevastone says:

    Me, too.

  33. jenevastone says:

    People bully because they sense and dislike difference, so trying to get them to recognize similarities can be helpful. Some children and some people bully because they have sociopathic or psychopathic tendencies–an inability to empathize with other people. Sociopaths and psychopaths create a lot of damage, but the vast majority of people have the psychological ability to empathize. No bully should be given the impression through empathetic outreach that their actions are excusable or acceptable. They need to focus on the sources of their own anger and manage it, not take it out on other people.

  34. jenevastone says:

    That’s what I argued. Thanks.

  35. jenevastone says:

    Yes–I agree.

  36. jenevastone says:

    Thank you for sharing so much of your experience with me. I don’t doubt your understanding of institutional racism. And your experience with disease and disability has been shaped by a number of complex factors.

    To answer your first question, how likely is it that more disabled people will be killed this way, you’re right that black men represent the cohort most likely to be murdered by police for “resisting arrest,” etc. But that doesn’t mean other non-blacks aren’t killed unjustly under very similar circumstances. And my saying that doesn’t invalidate your point that racism is endemic to American society and the biggest single contributing factor to this type of tragedy. “Including” (and I’ll explain why that’s in quotations later) other people murdered by police in a similar fashion doesn’t water down anything. It strengthens your case. Difference is a trigger for hostility–what are we going to do about it? Well, first off, we have to address the institutional racism in police departments and society, a tall order. But, in doing so, we bend the curve where difference in general is concerned. If anything, the deaths of persons who are not black strengthens this case by bringing more people on board in support.

    Actually, I think a lot of people with disabilities are killed this way, but the issue receives very little media attention. An acquaintance mentioned recently that her sibling with schizophrenia was killed by police for resisting arrest. Homeless people have a high incidence of mental illness, and they are often killed by police under similar circumstances.

    I also disagree with your assessment of me–I never said I understood or experienced institutional racism. In fact, I specifically said that I had not. But I have experienced going on two decades now of institutional ableism. And I will say that because disability cuts across every category of human existence, gender, race, religion, socioeconomic status, sexual orientation, etc., it tends to be a relatively welcoming community. Caregivers are an integral part of that community because of the ways in which disabilities can prevent people from participating in a society that’s structured for cognitively typical people and able-bodied people. Parents who are caregivers can become overprotective and interfering, just as parents of typical children do–so, yes, there is friction also.

    You’re assuming that the color of someone’s skin matters a great deal within the disabled community. But you don’t understand the factors that play a role in care and access. Do I have advantages that I can pass along to my son because I’m highly educated, because my husband is also and can earn a high income (only one of us can earn a sustainable income because of the burdens of care)? Yes, and that does have connections to our skin color. However, my experience has been that upper-income whites tend to treat genetic disability as shameful; whereas communities of color (ironically, given your experiences with AIDS, and especially Christian communities) tend to treat disability as a fact of life, and tend to see disabled children as teaching humanity something or making us all better people.

    The social currency of acceptance sometimes outweighs money–being able to address the problems of disability depends on both the availability of money (or qualifying for social services in lieu of your own income) and time. If your support network doesn’t think you deserved your fate because you’re genetically inferior, but believes difficult things can happen to anyone, you are more likely to have support in the form of respite care from neighbors and friends, which might allow you to work as a single mother, for example. Other in-kind help, like home adaptations, special beds, etc., that are made by people with carpentry and constructions skills are also incredibly valuable. Upper-class whites don’t tend to have manual labor skills. That doesn’t make it easy, just different.

    I could say a lot about how health insurance and Medicaid waivers are structured, but I would go on for a long, long time. My family can afford health insurance, but the State of Maryland did not provide us with any medical help for many years because which disabilities receive help and which do not is a matter the state legislature decides. Maryland has an autism waiver and another called the “model” waiver. Both require that the family pay for a private insurance plan, and then the waiver picks up deductibles, co-pays, and co-insurance for the disabled individual, but not the other family members (obviously). We’ve moved from a high-end insurance world in which out-of-pocket maximums (for covered items) have moved from $1,500 per year to $7,000 per year and still rising. In the days when insurance had lifetime maximums, we simply had to change insurers periodically to ensure that Robert would continue to have healthcare.

    Neither my husband nor myself has been able to sustain employment for other people long-term because of my son’s care needs, so we are both self-employed. Which brings me to the model waiver. In Maryland, parents are only eligible for that help if both of them work, which precludes families who have already decided to live on one income to accommodate the time burden of care. Even if your child needs overnight care, the state of Maryland believes one parent can just stay up all night in perpetuity if that parent doesn’t have a job. Hypothetically, my son always qualified for the model waiver because he met the lowest of the 6 hierarchical categories: not enough support to remain in the community. But because it’s underfunded, the waiting list is so long for category 6 that at this point, all children become adults before they make it to the top of the list–because there are 5 other need categories ahead of them. Robert finally qualified for a category that would actually result in a waiver when his g/i problems became so bad that he couldn’t tolerate large volumes of food and required overnight tube feeding. So he was de facto beginning to slowly starve to death and that’s when MD was able to give him a waiver.

    My husband and I estimate we have spent over $250,000 on Robert’s care and habilitation needs (this doesn’t include figures for lost income)–and that’s a best-case scenario because we continue to be able to afford good health insurance. Under the ACA, we don’t qualify for a subsidy, so our plan will run next year at $1,600/month. We are trying to hold on to an accessible home we worked hard to customize, but, should we lose it, Maryland has only minimal stock of accessible homes, and legislators don’t want to pressure builders or homeowners to require accessible features, even a ramp. Building a concrete ramp to a home because of the need for the proper gradient can cost $3-4,000 in materials alone. If you build a wooden ramp, you will have to replace it every few years due to rot and other instability.

    But back to inclusion. One of the reasons we are not communicating well is because you are focused on a large cohort and triage model. The way you dismissed the death of Robert Saylor as insignificant from a policy perspective speaks to this. It doesn’t matter what color your skin is–when you deal with disability, you get this attitude from people all the time: your issues don’t matter because your cohort is so small. It’s one thing if you’re only occasionally on the receiving end of that, but when you are always on the receiving end of that, you are effectively being excluded from support, care, and effective social change. You are an outcast. And people justify that based on your value as a human being. There aren’t enough of you to justify spending public money on your problems, regardless of the fact that your problems cost so much you can’t possibly afford them yourself, no matter how much money you make.

    So I live in a small cohort world where it is pressingly important to see people as individuals. You spoke of your anger and frustration with the bigotry in AIDS funding. But as you were able to push past social stigma, AIDS continues to affect a very large number of people, so it does get funded. People suffering from rare diseases will NEVER get funding under the large cohort model. They will always be left to suffer and die because no one can “justify” spending money on them. ALS is a rare disease, but it has a relatively large cohort within the community of rare diseases. I don’t have the figures at hand. Others of us deal with cohorts of less than 100. Try raising money for that for medical research. Even among the dystonias, DYT16 is unlikely to receive much attention because DYT1 and a few others have larger cohorts.

    So I believe strongly in inclusion. I don’t like exclusionary structures, especially when I get the impression that it’s inappropriate for me to even attempt to empathize with other people, even when we have things in common. And I believe that “privilege” creates exclusionary structures in the real world. In the academic world, it’s an interesting analytical tool to understand human interaction, but if you bring it into the world of individuals and lived experience, all it does is create divisiveness.

  37. Tatts says:

    “…the overall notion behind the concept of privilege is that you are unaware of the benefits…
    That’s not true at all. Privilege is a right or an advantage given to a person or group. It has absolutely nothing to do with being aware or not.

    And as an aside, I’d feel better about the Black Lives Matter issue if the community were directing it at the slaughter within rather than the very rare instances that they are protesting against. Your hypothetical black man walking with his hands in his pockets has much less to worry about in your scenario than he would if he walked down a street in North Philly or West Philly. Number of innocent people killed by cops in Philly this year: 0, number killed by black men: approximately 200. Number of violent crimes in Philadelphia last year: 17,074; number of shootings: 1,128. Who do we–and who do black people themselves–really need to fear?

  38. GarySFBCN says:

    So are you trying to steer the discussion away from privilege because it makes people defensive?

    When I was in elementary school, I was very short and bullied because of that. I had to learn to be faster and smarter than most to overcome that and it worked.

    But where does the empathy teaching come into play with those who bullied me for that?

  39. GarySFBCN says:

    I’m sorry you didn’t want to learn from the example. It seems you found it insulting and that wasn’t my intention.

    In the provision of urgent healthcare, you try to figure out who has it “worse or better” because resources dictate that you triage the people in need.

    There’s an epidemic of black men and boys being killed or otherwise harmed by law
    enforcement and judicial systems. One disabled child being senselessly
    killed by a policeman is horrific and I understand your concern, but it
    is not an epidemic.

    I’m reminded of the 1989 earthquake in the SF Bay Area – I couldn’t get home from work that day and it was a bit traumatic. For the next 4 years, I carried gloves and other ‘earthquake preparedness’ stuff in my day pack but the earthquake never came. I figured out that it wasn’t worth the extra weight and bulk to carry all of that stuff every day for an earthquake that may happen only every 30 years.

    So my question is this: How likely is it that other disabled kids are going to be killed this way? I can’t answer that. But given that I can name so many black males who have been killed or harmed by law enforcement and/or get no justice from the judiciary, I think it is very reasonable to expect to see that happen again, soon. There have been 2 additional events since the Ferguson grand jury decision earlier this week – the killing of the 12 year old boy in Ohio and the grand jury decision regarding the homicide of Eric Garner. That’s this week’s tally, that I know of.

    Anyway, if you would like to learn about privilege, I recommend searching out essays by Dr, Ken Hardy. I learned a lot from him, and you allude to some of the dynamics. In every interaction between two people, one person has privilege. This spans work position, gender, age, race, sexual orientation, etc and this is fluid. On the street as a white guy I had more privilege than the black guy next to me. At work, my boss, a black man, had more privilege than me.

    I’m not looking for empathy or sympathy, but since you asked, I spent 25 years working in teams to make lives better, mostly in poor, inner-city neighborhoods of color and that is where a lot of what I wrote is coming from. My office was based in downtown Oakland. During the first 15 years of the AIDS epidemic, I saw many friends and boyfriends die – more than 30. I was on the board of a AIDS information/referral organization, pre-Internet, and when there really wasn’t anyplace for people with AIDS to go for information. It was as heartbreaking as losing friends: Desperately searching for information to give to some very sick people and knowing that there wasn’t much hope.

    I’ve directed a few fund raising activities for different causes and have participated in more than a hundred of them. One of my nephews was born with a severe brain deformity and he lived for 12 years. At this moment, I’m struggling because a my sister-in-law has ALS and it seems to be a very aggressive case. 75% of people with ALS die within 3-5 years of diagnosis. As their youngest children are 11 year old twin girls, there are many issues, and yes, I send money whenever I can. When I’m not consumed with crises that affect me or people I know and love, I do I what I can for other “causes”, although after the HIV/AIDS work, I took a 4 year break. And while I thought that I processed all of the AIDS-era emotional stuff, desperately searching for information for my sister-in-law and knowing that there isn’t much hope brought back a lot of unprocessed issues from that era.

    The other issue is that I have witnessed members of my family experience racism-based prejudice (part of my family is ‘brown-skinned’ but not me), and as a family group we were sometimes treated as social outcasts because of prejudice. As we were not really poor and always lived in a crowded, robust, chaotic but loving multi-ethnic, multi-generational household, other than learning just how awful prejudiced people can be, this prejudice didn’t create any barriers for me growing up.

    I’m no saint and there are people who unselfishly do 1,000 times more stuff for people in need than I do. But I’ll match my knowledge and empathy regarding individual and institutional racism directed at blacks with any non-black person.

  40. Houndentenor says:

    The reason your daughter doesn’t understand is because it doesn’t make any sense. I had the same experience growing up in the south. I heard racist things from adults that made no sense to me, not because I was too young or naive but because what they were saying was nonsense and even at 5 or 6 I could see that. I have always identified with Scout in To Kill a Mockingbird for that reason. I just had this conversation (more or less) with someone in his early 20s. He’s baffled at the idea of segregation. He knows it was a thing but it doesn’t make any sense to him. Who cares how much pigmentation someone’s skin has? What difference does that make? I’m at a loss to explain it except to say that people were stupid and mean and did horrible things as a result. This generation gives me hope.

  41. Houndentenor says:

    Sometimes similes are all we have to work with. Being gay isn’t the same as being a racial minority. Both groups face discrimination and other things but they are obviously different. I do think that I have some empathy and at least I can listen and become aware. I certainly want to know what to do to make things better. If it’s simply that I can’t understand because I’m white, then how does anything ever change. I know I won’t have a perfect understanding of what it’s like to be black in America but I’m willing to give it my best shot. That’s all I can do.

  42. jenevastone says:

    This sort of attack is what my essay argues against: an unwillingness to be empathetic in general because you’re constantly trying to figure out who has it worse or better. As for the sentence of mine you quote at the top, I never say or imply that your privilege disappears when you’re aware of it–that’s your inference. Finally, it doesn’t seem you have ever had to deal with any of the issues involved in raising a child with serious disabilities–so what, exactly, do you know about how easy or how hard it is? As for the AIDS comparison, you’re making truly horrifying assumptions about me personally that you have no right to make. And what have you ever done to assure that funds flow to any disabled child? Very little, I suspect. I don’t need your learning exercises, thank you.

  43. FLL says:

    My colleagues here in South Florida are of different races, sexual orientations and religions (or lack thereof). They may be atypical because they are from the education field, but they have come to a general agreement: different groups have been oppressed in different ways, and it’s not a contest.

  44. GarySFBCN says:

    “Stepping back for a moment, the overall notion behind the concept of privilege is that you are unaware of the benefits you receive simply because of a group (race, gender, sexual orientation, economic) you inhabit.”

    Nope. One’s ‘privilege’ doesn’t disappear when one becomes aware of it.

    And sorry, I remember essays like this when AIDS first hit – the ‘we have cancer so we know what it is like to have AIDS’ essays, which were one degree away from ‘why does AIDS get all the funding’ essays. Having cancer is awful, but it wasn’t the same as being rejected by your family, friends, your doctor, your dentist, your insurance company, being evicted from your apartment etc. because of an AIDS diagnosis. Major religious leaders in the US were not publically saying that cancer is God’s retribution like they were (and continue to do so) about AIDS. And for the first decade, every dollar for AIDS funding was the result of aggressive activism. Little funding flowed into research, care and treatment without a fight. Cancer gets funding flowed without dying people having to chain themselves to the halls of congress.

    In my opinion, this essay attempts to white-wash the underlying racism that has resulted in the deaths of so many black men, because ‘me too.’

    As a learning exercise, I challenge the author to envision what it is like to have a disabled child and to be black. I guarantee that experience is way worse than she has it now. Institutional racism has leads to poor health outcomes, greater levels of poverty, higher unemployment, great propensity to live in unhealthful environments, less access to health care, lower quality of healthcare, etc. The constant allostatic load (stress levels) that pregnant black women endure affects their babies, and actually, if the baby is also exposed to this same stress, after the age of 2, permanent developmental issues arise.

    While I am sorry that the author and her child have to deal with such shitty people and unjust situations, this essay embarrasses me. It exemplifies what a well-meaning but somewhat clueless privileged white person knows about racism.

  45. dave3137 says:

    White, but not stupid. I happen to live in a mixed race neighorhood, where a lot of properties have gone to rentals. My family has owned this house for over a hundred years – quite literally. My point is only that while I have place here, I find the “newcomers” very welcome. What happens when a 12-year-old Hispanic kid who lives in a decrepit rental unit comes by to say hi, and tell you he’s bored? My response is to talk with the kid. He continues to visit. I continue to make him welcome. I learn he has problems in school that I don’t see. Is he a different kid with me than with others? Guess so. But you never know if you don’t say that first “hi”

  46. 2karmanot says:

    Well done Ms Stone! “all lives matter.” Oh yes, oh yes…………

  47. jenevastone says:

    I agree with you, absolutely, that children who identify as LGBT or are perceived as such are, more than others, targeted for bullying. It’s awful. I’m straight, but I have a gay sibling with a spouse, as well as many LGBT friends. I felt it would be a betrayal of their trust to raise my own children in anything less than a completely open and accepting environment–as it should be everywhere, but isn’t. The only negative consequence has been that my daughter had a hard time understanding why anyone would discriminate against anyone as a result of their sexual orientation. It was weirdly difficult to explain that bias to her and it took a long time.

  48. FLL says:

    Since you understand that children pick up their patterns of behavior from parents and other adults, you haven’t missed my point at all. I agree that under normal circumstances, children are empathic. There are, however, forces that can override that natural empathy during certain historical eras. During those exceptional historical eras, children become a battleground and are encouraged and coached to attack children of the “enemy” group. I think the 60s and 70s were such eras, when children of color probably bore the brunt of the hate and violence that erupted over racial integration. I think that we are now living in a similarly exceptional era, when children who identify as gay or are perceived as such, are the ones who are disproportionately targeted. Maybe it’s better to describe the current situation that way rather than use the unhelpful term “privilege.”

  49. jenevastone says:

    I may not fully understand what you refer to when you say children don’t have privilege–I’m trying to steer the discussion away from using the word “privilege” and encourage a focus on empathy. Children are certainly on a learning curve when it comes to empathy and depend often on the adults around them for guidance. So if their parents behave a certain way toward LGBT persons, they’ll take their cues from that, with either positive or negative consequences–acceptance or bullying. It may depend on where they attend school as well and the diversity within the school. I live in an area that’s considered liberal, so the schools encourage diversity, tolerance and understanding. Bullying is taken very seriously here, but it goes on and is a perversely difficult matter.

    On the other hand, very young children often have a natural empathy with people who are helpless or appear to be lonely or rejected. Throughout elementary school, typically developing children would vie for the honor of helping my son or pushing his wheelchair. As he moved into middle school, other children began to sort themselves into groups that became exclusionary. Humans tend to cluster into like-minded groups; it seems part of an evolutionary pattern. And you’re right, that’s where bullying becomes a problem–so the attitudes of adults and the culture of schools becomes critical in combatting this. My daughter’s high school has a pretty big Gay-Straight Alliance club that meets publicly. She’s a bit of an introvert, so she’s decided it’s too much of a social scene for her. Social progress often takes place at the very local level: homes, schools. Let me know if I’ve missed your point.

  50. FLL says:

    I can’t help but notice that children in general become targets of hate whenever they are the real or perceived members of a group whose social status is in flux. That is true today of children who either have identified as gay or are perceived as gay. I’m sure children of color became targets of hate during the 1960s and 1970s, when public schools were forced to integrate. I’ll offer a reason. You may think my reason is too accusatory, but I think it’s honest. The reason is that in the average workplace, it’s just too difficult to bully adults today, and there would often be consequences for the perpetrator. On the other hand, it’s very easy to use family pressure or religion or racism to encourage children to attack other children—in one historical era, children of color; in another historical era, children who identify or are perceived to be gay. Children are an easy target and, as such, do not have the privilege that you’re discussing in your post. Take a look at this anti-bullying video from France. What if we, as adults, had to deal today with what children have to deal with:
    https://www.youtube.com/watch?v=EpT9PL8RCw0

  51. jenevastone says:

    Thanks for reading–I’m glad to be able to contribute to the discussion.

  52. BeccaM says:

    Excellent post, Jeneva.

  53. 2patricius2 says:

    Thanks for your words and thoughts. The more articles and insights I read on these issues, the more I learn.

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