Is this a Marriage or a Carriage?

Editorial

Is this a Marriage or a Carriage?

Megan A. Conway, PhD

RDS Editor-in-Chief

Please forgive the pun in the title. Thoughts of “care” and “marriage” were floating around in my head as I was floating around in the pool.  I think about marriage a lot, partially because I am married (surprise, surprise), and partially because in my insecure moments (or when I am mad at my husband) I obsess over the role of care in my marriage. Who is taking care of who? What is “normal care” in our marriage, and what is “crip care”? I am deafblind so I don’t drive (not legally anyway). Am I asking too much when I ask my husband to do all of the driving for our family? My grandmother was not disabled and she didn’t drive. This was not atypical of her generation, as driving was often considered a “man’s job.” Was my grandfather a “carer” of my grandmother because he drove her everywhere? Or a chauffeur? Or a chauvinist?

Other things I have trouble doing independently include killing cockroaches, fixing leaky faucets, setting rat traps, scrubbing really dirty pots, barbecuing, cleaning the oven, climbing onto the roof, understanding the point of football, fixing my computer, and talking to my father-in-law. This is an impressive list of “man jobs” that somehow my liberal upbringing during the sexual revolution failed to teach me, so I do depend on my husband for these essential tasks. And no one would question his doing these tasks in his role as “husband.” Just as no one would question my doing the cooking, laundry, household management and primary childcare in my role as “wife.” I know plenty of women whose husbands do the cooking because hubby enjoys cooking. But if hubby does the cooking because his wife is disabled, that makes him a “carer” instead of “a guy who likes to cook.” If a wife does the cooking, whether her husband is disabled or not, she is just doing her job as a wife.

I recently met a couple where the wife has become significantly physically disabled during the past year. By all appearances the husband has taken on his new role as “carer” with grace, with caring, in fact. But it was also apparent that they still struggle with frustration at new barriers, with the things that the wife is no longer able to do. The “new normal” is hard to face, especially since society takes it for granted that a marriage is comprised of two people who will share equally in daily living tasks. That is an ideological view in a world where women still take on an unequal amount of household and childcare responsibilities even when they also take on an equal amount of financial responsibilities. Where is the help with childcare, transportation, cooking, bathing, and grocery shopping that this family with a single wage earner and a disabled family member needs? It does not exist. These duties are seen as the family’s responsibility, and if one member chooses to be a carer rather than dumping his useless wife off at the local multi-bed facility, that is his problem.

As I read the articles in this issue’s forum on “Cripping Care” I found myself stunned by the obvious but not-talked-about-enough parallels between feminist theory and disability theory. I hope the forum will also change your thinking about how we view care.

When A Hyphen Matters: Reflections on Disability and Language

Editorial

When A Hyphen Matters: Reflections on Disability and Language

Megan A. Conway, Ph.D.

RDS Editor-In-Chief

A colleague recently sent out an email titled, “Respect for My Community” in which he chastised a local service organization for distributing t-shirts that he believes misspelled the word “Deaf-Blind” (with hyphen) as “DeafBlind” (without hyphen). “Would YOU accept a T-shirt that said ‘dEAF’ [with improper capitalization]  or ‘Ward of Hearing’ [with spelling errors]?” he wrote, “Would YOU be proud to wear a T-shirt showing the public the WRONG spelling of YOUR community?” His point is well taken. He is proud of his identity as a Deaf-Blind person. He fought long and hard for recognition of language that would describe his unique disability in a way that also reflects his identity. For many Deaf-Blind people,  the hyphen is important because it signifies that “Deaf-Blind” is its own unique identity that is different from that of Deaf or Blind people. The capitalization of “D” and “B” are also important, because they signify cultural identity just as a capital “D” signifies Deaf cultural identity (as opposed to a lower case “d” which is understood to represent medical aspects of deafness).

Here is the difficulty though - one person’s identity as a hyphenated Deaf-Blind person does not reflect everyone’s identity. I personally am a deafblind (no hyphen) kind of gal. Some of this preference is aesthetic. I just like the way “deafblind” feels. It feels like one, clean, smooth word. For me, the hyphen medicalizes the word. And I am not alone. Outside of the United States, the term “deafblind”  has long been preferred, and it is catching on in the U.S. DeafBlind Citizens in Action (of which I am proud to be a member of the Board of Directors) uses the term “deafblind” (without a hyphen) to describe its membership. Even the American Association of the DeafBlind, once the champion of “Deaf-Blind” (with a hyphen), seems to have recently dropped it. According to one DeafBlind person, when asked about whether or not a hyphen is preferred:

"It is definitely DeafBlind... one word, capital D and capital B and NO hyphen.  It is true that it's always been hyphenated in the past.  When the word DeafBlind is hyphenated, it usually indicates that it is a problem and that it needs a solution.  As you know, DeafBlind people don't have problems that need solutions.... we have a language and culture!  What we need and deserve is a community of people who will learn and respect our ways.”

I personally do not identify with use of the capitol “D” and “B” because I have never quite seen myself as a part of a “culture” related to Deafness, Blindness, or DeafBlindness. This is mostly etiological - Although I am “legally” deafblind I do have some vision and hearing and use speech to communicate. I consider myself to have some degree of membership in all of these communities, they are my people. But for me personally, capitalization does not matter.

This conversation about hyphens and capitalizations will, if it has not done so already, eventually put you into a deep coma. Who cares? Why are we arguing about grammar when there is so much good work that needs to be done to support Deaf-Blind/deafblind/DeafBlind/D/deaf and B/blind people in the community? Well, the answer is that it does matter and it does not matter. We do need to recognize that a hyphen can matter. And then we do need to move on.

Language matters because language has the power to shape societal perceptions, and language also reflects societal perceptions. Those who used to be called “crippled”, “imbeciles”, “deaf and dumb”, and “retards” know how such language impacted how other people treated them and how they perceived themselves. “The Handicapped” fought long and hard for the word “disabled” because it feels more respectful and because “disabled” has become a signifier of identity and community membership that was claimed by disabled people themselves. But there is nothing to say that “disabled” will be a preferred term forever, nor that it is the preferred term for everyone who might be identified as such by others. Some people do not like the word “disabled” because they feel that it does not describe them. Similarly, at one time some members of the Deaf-Blind community decided that “Deaf-Blind” best described that community. But others then, and others now, do not agree.

Now for the moving on. The issue of language always comes up in my Disability Studies courses because students want to use language respectfully, but they sometimes just don’t know how. “Is it o.k. to say ‘handicapped’? What about ‘handicapable’? Anything is o.k. so long as I put the person first, right?” To this later question I want to say, “Oh yeah, sure, if you call me a ‘person who is an imbecile’ that will be just fine” (but I don’t, because I am the wise professor). What I DO tell my students, and what I say to you is, “Respect the person by respecting how they identify themselves.” If you see yourself as Deaf-Blind, and it matters to you that I use a hyphen when I refer to you as Deaf-Blind, I will call you Deaf-Blind.

That’s all very nice miss Pollyanna, but what do we do when we need to reach a consensus about the name of our organization,  or how our disability is cited in the law, or how other people should refer to our community? In my opinion we do our best to ensure that the language that we use reflects the preferences of a majority of our community, the rest of us grin and bear it, and we move on to helping each other make our lives better.

Though it is too bad we can’t all be like my grandfather who always said, “You can call me anything you want - just don’t call me late for dinner.”

Thinking About Immigration and Disability

By Raphael Raphael, Ph.D.
RDS Associate Editor for Multimedia & Creative Works     

The state and the body are always connected.  In times of crisis (political and economic), there is often increasing concern with borders, both of the nation and of the body.  It becomes “urgent” to protect the state from contagions and threats, real or imagined. With increasing urgency, leaders often attempt to unify their base by clearly articulating what it means to be a "normal citizen,” identifying which bodies are included and which are not.  We can see this connection between body and state both in the present and in the past.

History is replete with examples, and the lessons are not subtle. As the Third Reich consolidated power in 1933, among their first actions was to identify people with disabilities  as enemies of the state. Just six months after assuming power, they passed the Law for the Prevention of Progeny with Hereditary Diseases.  On one hand, the physically strong and independent Übermensch (superman) served as powerful symbol of a strong independent German state. On the other hand, there was perhaps no more inconvenient sign than people with disabilities: inconvenient truths of the vulnerability of bodies, of their needs and undeniable interdependence.  Eliminating these inconvenient bodies became an important early step in nation-building, and the muted national response to their elimination became a tragic rehearsal for much larger atrocities.  (See Liz Crow’s short film Resistance (2009) and David Mitchell and Susan Snyder’s upcoming Disposable Humanity.)

Our present moment reflects a great deal of border anxiety. There’s rhetoric of literal wall building to protect imaginary and geographic borders and a troubling rise of isolationist/anti-immigrant rhetoric in the United States and Europe.  The rising chorus of voices saying which bodies should be citizens and which should not marks a shift that has taken many in the world by surprise: there was near global shock to the assumption of power by the current POTUS in the US and to the passage of Brexit in Great Britain, as well as to the recent near-miss in closely watched elections in France. 

At least in the United States, this rise in border anxiety appears to coincide with increasing government disdain (or at least apparent disinterest) in the needs of those with disabilities.  The current POTUS, who as a candidate famously mocked a reporter with disabilities, has a pattern of choosing appointees with apparent disinterest in the needs of people with disabilities.  It was widely reported that now Secretary of Education Betsy DeVos appeared confused about basic legal protections afforded to all students with disabilities.  As recently as May 24th, Ms. Devos refused to say she would refuse federal funds to schools that discriminated against students with special needs. The confirmation hearing of Supreme Court nominee Neil Gorsuch, revealed a seemingly similar lack of concern: a case showed him unnecessarily ruling against a student with autism, a questionable ruling the Supreme Court subsequently rebuked (during his actual confirmation hearings).  Some rhetoric in current efforts at immigration reform has also evoked the danger posed by immigrants drawing on public services in ways that could easily target those with disabilities for exclusion. 

While this particularly anxious moment has taken many by surprise, immigration and disability have long been tied in the history of the United States.  Two centuries ago, with the Immigration Act of 1882, the country identified people with disabilities as potential “threat to the nation” and has since had a long history of using disability as criteria for immigration exclusion (See Daniel J. Wilson’s “‘No Defectives Need Apply’: Disability and Immigration.” OAH Magazine of History 23 [July 2009]: 35-40.) Today, the ‘ideal’ citizen has been more explicitly tied to religion and ethnicity than to issues of ability, with Islamic people the immediate subject of particularly intense suspicion.  At the same time, history suggests it’s wise for us to keep mindful of possible slippages of otherness, slippages that frequently allow these fears to bleed to the body and to disability. With a view shared by many, embattled former National Security Advisor Michael Flynn famously described Islam in biological terms, as a “cancer” threatening national security and as a “sick” ideology that, per his tweet, “needs to B [sic] healed.”  The US administration’s recent attempt at a Muslim ban attempted to “cure” this “sickness.”

As the effects of early exclusion policies still echo and debates rage over who belongs, who does not belong, who is worthy of entrance, who is not, a great deal of attention is rightly paid to the ethnic and religious dimensions of the debate. Perhaps we should give more attention to also considering the ways in which disability may intertwine with these. In a time when nations are actually increasingly interdependent, with a variety of bodies—with a variety of needs—often living in flow between nations, perhaps the greatest threat is pretending this isn’t so.  And in this chain of bodies that need one another and have the power to speak out for one another, now more than ever, as Martin Niemöller reminded us, it doesn’t matter who they come for first.

What About Disability and Social Justice?

Editorial

What About Disability and Social Justice?

(formally “Disabled Lives Matter” - revised June, 2018)

Megan A. Conway, Ph.D.
RDS Editor

The Southern Poverty Law Center sent out a survey to educators after the election, asking them to describe the impact of the election on the school climate for people of color, religious minorities, women, and people who are LGBT. They recently issued a report that indicates that 90% of respondents believe that the election has had a negative impact on the school climate for marginalized students. Missing from this valuable piece of research is people with disabilities. Why? Are people with disabilities negatively targeted or discriminated against based on their disability? Given that students with disabilities are twice as likely to be bullied than their non disabled peers, I would say the answer is “yes”. Hate crimes and hate speech against people with disabilities, although prevalent, are largely unreported. Although the incident earlier this year in Chicago where a young white man with an intellectual disability was tortured by four blacks was widely publicized, the focus was primarily on racial motivations for the crime, not on disability. I would suggest that the reason why people with disabilities are not thought of as part of the spectrum of people with identities adversely affected by the election is because it is generally accepted that belittling, bullying, excluding and disregarding people with disabilities is a normative and acceptable practice.

I am deafblind and I grew up in the 1970’s in San Francisco. I reached Kindergarten age the same year as the passage of federal special education legislation required that children with disabilities receive a “free and appropriate public education” in the “least restrictive environment.” My local public school’s answer to that predicament was to recommend educating me in a basement room, by myself, where I could receive “special attention.” Throughout elementary school, though I went to several different small, private Montessori schools (the basement was a deal breaker for Mom), I was constantly ostracized and teased by other children. No one would play with me at recess. If they did play with me I was always the “cootie” and they would run screaming from me, yelling  “cootie catcher, cootie catcher.” I was rarely invited to birthday parties. I was always the last one picked for team sports. Even  “Benji Booger” got picked before me.  During middle school the teasing and exclusion escalated. Boys pushed their noses up against the blackboard, imitating my need to stand close in order to see. Everyone left the table in the cafeteria when I sat down with my tray. Girls “spread the word” to anyone not in the know that I was “weird” and “unpopular.” One girl screamed at me in shop class that she “hated me” even though I barely knew her. An enlightened boy whispered, “You are a sexy fox,” directly into my hearing aid from the seat behind me on the school bus, every day, for two years.

Forty years after activists with disabilities occupied the Federal Building in San Francisco for 28 days to protest lack of implementation of civil rights legislation imbedded in the Rehabilitation Act, and twenty-five years after the passage of the Americans with Disabilities Act, we are still not widely recognized as a distinct minority group who experience discrimination and wrongful treatment similar to that experienced by other minority groups. We are also not recognized as a people who have built a positive and evocative group identity on the ruins of past discrimination and the foundations of present stigma.

Society still views people with disabilities as defective folk whose only hope is to be normalized. This is the same argument as the one that says the only hope for equality is for women to be more like men, for Blacks to “act white”, for gays to go straight, and for Jews to accept Jesus as their savior. Today, in order to be recognized as a valid minority, we have to claim our identity in a way that is apologetic, medicalized, and exceptionalized. We have to claim to be different because we are substandard. First we must prove that we are “really disabled.” We must show that we are “unable to perform normal life activities.” We must be “unable to work.” Yet at the same time, society demands that people with disabilities be deserving, and not expect too much. People with disabilities should be “otherwise qualified” to apply for a job. We should not expect that “equal treatment” will result in “equal access.” And we most certainly should not expect anything beyond a “reasonable” accommodation.

Although thankfully my middle school years are behind me, even as a well-educated, well-employed adult I continue to experience the negative impact of how society views me as a disabled person. Sometimes it is seemingly unimportant things, like the fact that I cannot go to the movies with my daughter because although the theater professes to have an assistive listening device, the battery is always dead or the static makes the device unusable. Sometimes it is things that are hard to name or pin down, what other minority communities would call “microaggressions,” like being called “arrogant” behind my back at my workplace because I am always “being negative” about access issues. And sometimes I experience plain old fashioned blatant discrimination, like when the cab driver who was about to stop instead accelerates and zooms past me or the bus driver shouts to me and my (clearly vested) Service Dog, “Hey, you with the dog, where your papers? I ain’t movin this bus until I see some papers.”

Is it no wonder then that people with disabilities are lost and marginalized even within other minority rights and identity conversations? How can disabled people find themselves to be deserving, equal and powerful under the shroud of a society and a political system that shuns them as equal citizens?

People with disabilities need to claim their identity, and claim it with pride. If we view ourselves as abnormal, sub human, and undeserving of dignity and respect, we will be lost. Many similarly stigmatized groups have achieved more success then we have in convincing others that we can be both different, a minority group with a distinct identity, and the same, human beings who are just like everyone else. This shift in perspective goes hand in hand with changes to the political system, not before it nor behind it. The law, through the very act of protecting the civil rights of a group of people, shapes the identity of that group of people. The trick is to shape that identity in a way that will actually result in civil liberties.  Disability rights laws and policies need to be modified, and in many cases they need to be interpreted differently. But disability also needs to be integrated more fully into the general civil rights discussion, and that includes research, policy making, and the public consciousness.