On the first day of Spring Break I fired an M-16 assault rifle.

Motherhood made me do it, but not for the reasons you might think.

You see, this peace-loving, anti-violence mother who won’t permit anything to be killed in the house gave birth to a now grown child who is a gifted marksman. So off we went to the only public indoor shooting range in town - this being my other hometown of Albuquerque, NM, since DC has some rules about gun possession that haven’t changed recently to the best of my knowledge, though they may be about to…

The last time I fired a gun was in 1992, when I was living in the South Fork Valley in Shoshone National Forest, 42 miles from Cody, Wyoming. Most everyone I knew carried a weapon in their vehicle and had a few others stashed at home. Guns and hunting were deeply embedded into the local culture, harkening back to town founder and promoter Buffalo Bill Cody and his Wild West Show. Firearms weren’t part of the culture I grew up with, but I figured when in Rome do as the Romans do. So I learned to shoot with a sweet little 9 mm Italian pistol that fit my hand like a newborn baby’s foot.

My son was a toddler when we left Wyoming. Now, it may have been early exposure to guns that lead to his fascination with them later; I’ll never know. But the point of my blog today is not so much to wax poetic about the smell of gunpowder and the bone-jarring feeling of recoil that passes through your body, but something else – the idea of an open future.

As I wrap up my dissertation, which evaluates the question of whether using genetic technology to bear deaf children is morally justifiable, I’ve been thinking quite a bit about open futures, a concept popularized (if that word can be used for a term that appears mostly in peer-reviewed philosophy journals) by the late great philosopher Joel Feinberg.

The idea is this: parents have a moral obligation to provide their children with opportunities that give them as many options as possible for creating fulfilling lives. When parents make decisions that foreclose these options, it can be seen as shirking your duty as a parent. If these decisions deal with something like not ensuring that one’s child has the ability to hear, it can be viewed as bordering on abusive or immoral; at least that is how some scholars have put it.

I’m not going to disclose what conclusions I come to in my dissertation with this issue; I’m told that I have to wait until it is signed, sealed, and delivered before I can make any more comments about it. But that’s okay, since what is really on my mind is this journey of parenthood.

When you give birth to a child – regardless of whether that child is deaf or hearing – you have a set of dreams or expectations about what your life with that child should look like. And, as any parent can tell you, the passage of time does something to those dreams. It is not that the dreams change, but that they collide with the reality of that child who is right there before you.

You may prefer to spend your time walking through the woods and examining bugs on trees and tracking animals, but your child turns out to prefer shopping malls and playing around with art supplies. And if you are attentive to your child, you decide one Saturday morning to go to the art supply store instead of the river trail, or to go to the shooting range instead of hanging out at the funky coffee shop with alternative magazines. And it turns out to open up futures that you never would have imagined for yourself as a parent.

And that’s ok.

Actually, it’s more than ok.

To be sure, there’s a difference between making a decision about your child’s physical make-up and deciding what activities you will first pursue with your child. But perhaps the big issue is not so much what you decide you will to do shape your child, as what you do when it first becomes apparent that your child is not you. At some point, you either recognize that you are different people and you accept it, or you resist your differences every step of the way – kicking and screaming through their childhood as the stage mother or Little League father that everyone tries to avoid.

I’m wondering if the proponents of the open future arguments stop too soon by limiting it to physical characteristics that inhere at birth or shortly thereafter.

Is it that we are morally obligated to provide our children with open futures, defined as making sure as many options as possible are available to our children?

Or ought we to focus on the supererogatory duty of parents to go beyond this — nurturing those interests and passions that our children develop, even when they may be antithetical to our own, but so long as they are not causing harm to themselves or others?

Since I’m writing this midstream through the journey of parenting, I cannot know whether my conclusions now will be the same as whatever I reach when my children are fully formed and out on their own. But I’ve got a hunch they might be.

When your children are young, you pour your ideas about the world and right and wrong and good and bad into their little heads, thinking that you are doing the right thing and your duty as a parent, by doing so. Now that I’ve got one child ready to fledge, I find myself pausing to think about just who in the parent-child relationship benefits most from this broadly constructed notion of open futures.

I’ll give you a hint: I don’t think it’s the child.

It has been a long time since I’ve posted on DeafDC. Too long, in fact. My excuse is that I’ve been writing other stuff, namely a dissertation that has to be defended this term, but also a brief piece on the UK Human Fertilisation and Embryology Bill for Bionews co-written with some superb academic colleagues – geneticists Anna Middleton and Rachel Belk. (Unfortunately, the link now goes to the Bionews archives so you’ll have to enter the authors’ names to locate the actual article). So I’ll borrow a page from Jane Austen and ask your forgiveness, Dear Readers.
A few weeks ago, I was chatting with a Hearing friend about an event we had recently attended that was full of other Hearing people. At some point, my Hearing friend mentioned that there were no Deaf people at this event. I looked at my friend, and said, “But I was there!”

And this friend, in all sincerity, remarked, “Well, I think of you as Hearing.”

And I’m absolutely sure no disrespect was intended, but this little comment really took me aback.

Part of it has to do with the way that the terms Hearing and Deaf are used in the signing Deaf community – they are typically used as dyads representing the only possible positions one can adopt.

One is either affiliated with Hearing culture or Deaf culture. As much as I like Descartes, I’m not enamored of this Cartesian tendency towards insisting that things must be placed in one of two categories.

Part of this stems from my own ethnic background – I identify as having both European and Arab heritage. Being told that I must pick one or the other just feels deeply wrong to me, and I’ve never been able to get past this moral intuition.

In addition to the ‘What are you?” questions I got as a child living in a very White community in northern Orange County, California, I was also admonished by family members not to reveal my Arab roots during the 1973 OAPEC oil embargo, and later during the Iranian hostage crisis in the early 1980s. (Yes, I know that Iranians are not Arabs, but this was not common knowledge in southern California in the 1970s and 1980s, since people frequently tended to conflate Arab with Middle Eastern.)

The upshot of not revealing my heritage was that people made false assumptions about my heritage based on my olive skin, brown hair and brown eyes.

In southern California, this meant that most people assumed I was part Mexican-American. Having two grandfathers and other relatives who were conversant in Spanish did nothing to dispel this; having best friends from elementary school to high school who were fluent in Spanish contributed to these perceptions; and last but not least, having relatives of Arab descent living in Mexico and Chile reinforced this even further.

As it happens, I had enough hearing as a child to hear racist remarks about Mexicans – more than a few of them were directed at me. The remarks about Arabs usually were not aimed my way, but were also made in my presence. Both made me squirm, though for different reasons.

When I look back on this, I think about the importance of being able to name who you are and being able to stand up for those you love - who may or may not fall into different categories than your own.

As a child, I hadn’t yet learned to do that.

I like to think that I’m better at this now.

When I was assigned to the category of Hearing, something in me railed against being falsely labeled yet again. It is not because I despise Hearing people – there are many Hearing people in my life I love dearly and for whom I would go to the ends of the earth.

The reason my stomach lurched was because it seemed to dismiss a big part of who I am and all that I have done to fight for my own communication access – starting in college with the first ADA claim that I filed with the Justice Department and continuing through today.

(An aside - I think the last claim I filed on a national level was in 2007 dealing with violations of FCC emergency captioning, or maybe it was a TSA complaint related to air travel? I forget. You get my point – advocating for communication access is part and parcel of my very being.)

I didn’t do these things as a Hearing person – a Hearing person would have no reason to fight for her own communication access in a world designed to meet the needs of Hearing people.

Just to mix things up a bit, for the past few years, I’ve had an ongoing dialogue with several Deaf of Deaf friends, who tell me that I am Deaf and that I should just accept this.

I resist this definition for a different reason – I was mainstreamed, I still use my residual hearing and my voice, and English is my first language.

Having said all that, I deeply cherish the signing Deaf community and the friends I have made within it. I continue to work everyday on improving my ASL, and am honored to be included in this community. I owe much to this community, and I do what I can to reciprocate. Somehow, making the claim that I am Deaf feels false to me – I don’t want to be a Deaf wannabe and I fear that claiming community membership might appear inauthentic in some way.

So what’s left?

I’m not fully at ease calling myself ‘a person with hearing loss’, because I am a philosopher by training, and believe that to be a person with hearing loss means that one must feel she has lost something. Yet I haven’t lost anything – or not that I can recall. (For those of you who like philosophy, I’m thinking about the distinction between privation and deprivation here).

I could always fall back on ‘hard of hearing’ and in the past I’ve made an argument for reclaiming this slightly pejorative term vis-à-vis ‘queer’ or ‘gimp’. Some days I like this idea; other days I’m less enamored of it. In recent years, I’ve had a number of Deaf people tell me that calling oneself ‘hard-of-hearing’ is akin to being an Uncle Tom. (I can’t help but savor the irony of a family connection that traces back to the woman who coined that term).

So far, I haven’t been persuaded by this argument. I think it rests on how one defines hard-of-hearing. My preliminary research indicates that the historical record of this term provides some evidence for defining a hard of hearing person as one who shifts between the Hearing and Deaf worlds. As I see it, this is not unlike being part Arab-American and part European-American and embracing both.

These days I’m not so sure how to label myself.

But two things resonate for me.

First: it seems to be a central tenet of human dignity to allow people the freedom to make their own claims about their identities. Anything less seems to encroach on basic human liberty.

And second:

I’m not Hearing.

By now many of you are aware of the proposed Human Fertilisation and Embryology Bill (HFEB) in its second reading in the House of Lords in London and the response of the British Deaf Association opposing this bill due to its eugenics implications, which include the potential to place restrictions on certain kinds of reproductive practices. This topic has special meaning for me – for the past four years, I have been writing a Ph.D. dissertation that evaluates the moral permissibility of using genetic technology in order to ensure the birth of a deaf child.

I first set eyes on the Palace of Westminster (where the House of Lords is located) last October, when I was in London attending the Disability Capital 2007 conference to give a talk on genetic selection from my dissertation research titled “Deaf Genes and Hearing Parents: The New Eugenics.” Little did I suspect that in a several weeks this topic would become more relevant in London than I could have possibly imagined.

On 22 November 2007, deaf lawyer Alison Bryan posted this blog about the Human Fertilisation and Embryology bill in the House of Lords.

On 28 November 2007, the British Deaf Association (BDA) issued a draft letter opposing the proposed change to the Human Fertilisation and Embryology Bill in Clause 14, section 4, number 9 (Lines 23-30, Page 10), which states:

Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.

The BDA letter raises two important ethical concerns in response to this bill:

1. Who is not permitted to reproduce?
2. Who is prevented from coming into existence?

For several reasons, I’ve been following the HFEB quite closely. Since I am a philosopher and bioethicist, I decided to blog about these issues. My main goal is to clarify the issues and to explain how these two questions connect to the text of the HFEB. Today’s post focuses only on the first question, which deals with reproductive liberty, or the freedom to bear children. In the few days, I’ll follow this post with a post that takes a look at the second question, which deals with genetic selection.

Who is not permitted to reproduce?

Let me preface this by repeating that I am a philosopher, and I am not trained in British law. Philosophers are trained in argument analysis and this is what my post focuses on. Breaking down the language of the bill is a good place to start.

Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk…

Setting aside the issue of embryos (that’s the next blog), what does this mean? Well, one interpretation of this is that it establishes a group of people the law applies to – this is the class of people “known to have a gene, chromosome of mitochondrion abnormality involving a significant risk”. Hold on – what exactly does this phrase mean, “significant risk”? Interestingly enough, it is not defined anywhere in the HFEB. And what about “known”? How does a person find out if he or she has any of this genetic material? What if genetic testing becomes part of the accepted standard of health care? What happens to this information? Who safeguards this information – the same entity that is charged with upholding this law?

Continuing on with the language in the bill…

…significant risk that a person with the abnormality will have or develop—
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition,

Now we’ve added ‘abnormality’ to our list of undefined terms. “Serious” is a popular word in the HFEB, modifying all sorts of physical variations. The problem is, we’re once again dealing with an undefined term. We do know this from the House of Lords debates: deafness is defined as a serious condition.

Finally, we come to the end of the clause:

…must not be preferred to those that are not known to have such an abnormality.

Here’s the plain English summary (as I understand it):

The class of people known to have genetic material with a significant chance of resulting in the birth of a person with a serious condition should not be preferred over people whose genetic material will not likely result in the birth of people with a serious condition.

There’s a real problem here folks. This is a pretty darn big class of people. According to the Genetic Alliance, a coalition of genetic advocacy organizations,

Currently, there are more than 1300 diseases for which genetic tests are clinically available, several hundred tests used in research, and even more in various stages of development.

I wonder how many of these genetic tests are for “serious” conditions? Undoubtedly quite a few – medical and scientific research agendas focus on what is well funded. Trivial stuff isn’t as well funded as the other stuff. You should be aware that a person can be a carrier for a genetic variation and appear perfectly “normal” (whatever that is).

The BDA draft letter makes this important point:

A related issue is that the language of this bill effectively prevents all people who hold carrier status for any genetically identifiable serious physical or mental disability, illness, or other serious medical condition would be prohibited from becoming gamete donors… the language of this clause makes it highly likely that a significant number of citizens will not be permitted to donate gametes.

To be sure, gamete donation is about donating eggs or sperm, and not everyone wants to do this, or thinks this is moral. I’ll concede that. But here’s another question: will reproductive services in England only be available to those with the right genetic material?

The BDA draft letter offers these two scenarios:

Deaf people seeking fertility treatment will be denied access to these services if they possess genetic conditions that result only in the formation of embryos associated with deafness. Consider the infertile deaf couple desiring to have a child. Before fertility testing commences, genetic testing is conducted on the couple, and results indicate that all of their offspring will be deaf. The infertile couple’s request for fertility services is denied for the reason that embryos associated with genetic deafness are not preferred. Thus, the couple is denied the opportunity to have any children based on the stated preference against ‘abnormality’.

…a deaf couple has one deaf child, conceived through IVF several years ago, who is currently in need of a bone marrow transplant due to illness unrelated to her deafness. The child is quite ill, and her best chances of survival will come from marrow donated by a well matched donor, such as a sibling. The parents hope to save their existing child’s life by conceiving another child through IVF, using PGD to select embryo with the best bone marrow match for their existing child. Since the parents can only have deaf children, and the law prohibits access to fertility services on the basis of genetic deafness, the couple is not only denied fertility services, but denied the opportunity to pursue the strategy offering the best chance of survival for their remaining child.

The BDA draft letter is written from a Deaf perspective, but the HFEB applies to many others. It has the potential to restrict “reproductive liberty” by excluding some people from pursuing the medical means necessary to have children – even if their genetic variation is completely unrelated to the reasons they cannot have children.

This is a blog that focuses on issues related to deaf people, so I’ve limited my analysis to the HFEB and the BDA draft letter. But the current language in the proposed HFEB will apply to many others as well.

So…what do you think?

(Day of the Dead: To each land, its customs)

Most of the time, I think living in two places has its advantages. Sure, it is incredibly frustrating to want to put your hands on a book right this very minute and realize that it is 1,892.25 miles away (according to Mapquest), but the benefits of experiencing two vastly different locales often outweigh the disadvantages. One of the perks of living in two places is exposure to different cultural communities and traditions. Yet every so often, like my books, I’m not in the place I want to be.

Don’t get me wrong — there are plenty of things to like about Washington DC, but there are times when I long to be at home in my adobe casita in Barelas, an historic neighborhood nestled next to the Rio Grande in Albuquerque, New Mexico. This is one of those times. My favorite holiday of the year is coming up, and Día de los Muertos just isn’t the same in Washington DC.

Día de los Muertos Altar National Hispanic Culture Center October 28, 2007
Photo copyright Venerable Photography

In case you haven’t spent much time near the US/Mexican border, or are not fortunate enough to live near a community that makes a point of celebrating this holiday, Día de los Muertos is a holiday of Mexican origin that honors the dead. The holiday stretches over two days; on November 1st the day is dedicated to remembering deceased children, los angelitos; November 2nd is reserved for remembering adults who have died. Contrary to what you might think, Día de los Muertos is not a solemn holiday marked by tears and somber eulogies; instead, it is a holiday filled with colorful flowers and colorful memories, good cheer and good food (For more detailed information about Día de los Muertos, check out this website of an American/Mexican joint celebration of the holiday in El Paso, Texas, USA and Ciudad de Juárez, Chihuahua, Mexico).

There are private and public holiday rituals. My family always starts by setting up an altar in our home. First, we carefully select photographs of those we want to remember and honor, looking for pictures that show a person’s essence — whether it is a shy smile or a candid snapshot capturing a favorite pastime. We surround these pictures with traditional orange-yellow marigolds, papel picado candles, pan de muertos, calaveras or sugar skulls (I prefer the kind with names written on the forehead), a glass or two of water, and bottles of vino y cerveza. Then we include special items that once belonged to the deceased. These can vary wildly — from a first edition of Paul Lawrence Dunbar poems to a hunk of schist dotted with quartz collected in the Santa Ana Mountains of California to a dog collar with tags.

Día de los Muertos Altar honoring Diego Rivera at National Hispanic Culture Center October 28, 2007
Copyright Venerable Photography

This will be my 4th Día de los Muertos in Washington DC, and I’m still trying to figure out where to get the best pan de muertos in DC, and which panaderías will personalize sugar skulls with names piped in icing, and where to buy armfuls of locally grown marigolds without breaking my budget (Reader tips welcome!). But I have figured out where to spend some of my Día de los Muertos time this year, and that is at the Cultural Institute of Mexico’s annual opening of the Altar de Muertos (Altar of the Dead) on November 2 at 7 pm in Northwest DC. This year’s altar will be dedicated to famed Mexican artist Frida Kahlo, commemorating the 100th anniversary of her birth in 1907.

Did I say there are disadvantages to living in two places? Let me correct that. There’s something serendipitous about the public celebrations of the holiday in my two cities, starting last weekend with the National Hispanic Culture Center in Albuquerque whose Día de los Muertos altar was dedicated to the master muralist Diego Rivera and wrapping up the holiday by honoring the contributions of Rivera’s artist wife Frida Kahlo at the Cultural Institute of Mexico in Washington DC. We should all be so lucky.

Disclaimer: Although Teresa Blankmeyer Burke has many institutional and other affiliations, the contents of this blog represent Teresa’s personal views only, and are not associated with any of her professional affiliations.

Uninvited. Again.

I’m getting tired of being uninvited.

The first time this happened was when I was an eager M.A. graduate student, new to my academic discipline and flush with success from my first experience of filing an ADA complaint with the US Department of Justice. A professor in my department told me about a local academic conference in my field and suggested I attend. I filled out my application, popped it into the mail, and waited to hear from the conference organizers about arranging accommodations for communication access.

After a few weeks, I started to get concerned. I hadn’t heard anything from the conference organizers, so I followed up by e-mail. Their response was decidedly mixed. First, I was told that since I was not a member of the organization, they would not provide accomodations. When I pointed out that I had paid the member fees along with my registration fees, they told me they’d get back to me. Less than a week later, I was told that I could not attend the conference. The letter was signed by a graduate student who was helping to organize the conference.

I figured this was a mistake. Maybe the graduate student did not understand the legal implications of what he had done by “uninviting” me, but surely the people in charge (whoever they were) would understand that this was not appropriate on a number of levels. Wouldn’t a professional organization using the word “ethics” in its name and identifying itself as focused on an inclusive creed of compassion think carefully about the moral implications of telling a graduate student with a disability that she was not welcome? (Trust me, this organization was not aware of the Deaf/disability debate, and would have framed this entirely in terms of disability). Less important, from my view, was the fact that they were likely breaking the law.

I was a bit wiser this time around, so I contacted the professor who had told me about the conference in the first place. He got in touch with the organization and received the same response: I was uninvited. Fortunately for me, he also disagreed with their decision. To make a long story short, we went to Protection and Advocacy, they dealt with the conference organizers, and I was “re-invited”, this time with accommodations. It took precious time away from my studies and irreplaceable time away from my family, but I believed it was worth it because I wanted to be a philosopher, and participating in conferences was part of what philosophers did.

Fast forward a decade or so to Autumn 2007. This time, I was part of a mixed group of scholars (deaf, hearing and hard of hearing) invited to submit papers for a conference taking place outside of the U.S. Since this would be the first time the organization would present a panel with analysis by scholars working in deaf and disability studies, both the panelists and the organization were excited about the possibility of having a rich discussion period following our presentations. Perhaps we could even build future collaborative efforts! We scholars wrote and submitted our papers, had them accepted, and then started dealing with the logistics and costs of having several deaf people attend who were relying on different signed languages at an academic conference. At the end of the day, the sponsoring organization just didn’t have the funds for full accommodations. We were politely “uninvited”.

The story of being uninvited plays out in many other ways. A hard of hearing colleague working in a large organization mentioned to me that she had been “uninvited” recently – it seems that a person putting on an event had wanted to include her in an all day meeting because of her professional expertise, but did not want to deal with accommodations. The disturbing part of this is that the hard of hearing person had been working for this company for more than 20 years and this was the first time this had occurred – long after the employee had proven her worth and loyalty to the company.

There’s also the story of the hard of hearing mother, who was uninvited from the school carpool after one of the other parents found out about her hearing loss. And the deaf professor who was invited to give a presentation at a prestigious liberal arts college, and then upon arrival, was told that she could not stay in campus lodging facilities because she was a danger to herself. In this case, she was still invited to give her talk, just uninvited (at midnight) to stay at her arranged lodgings and left to scramble for a place to stay in an unfamiliar city with no TTY or internet access available to her.

Other issues lurk in the background. Is there a moral obligation to include people who want to participate – even if they cost more money? If so, who should pay? Is there a limit to how much money is reasonable? Granted, the ADA mentions undue hardship for small businesses. As a granddaughter of small business owners, I know how tough it is for small businesses to survive and thrive, and I certainly don’t want small businesses going bankrupt providing access. On the other hand (to paraphrase a famous colloquialism) accepting that “my right to access ends where it hits your pocketbook” seems to equate justice with how much money is available. Something about that assumption just sticks in my craw.

I could go on, but you get my point: don’t invite us to the party if you think you might uninvite us later on.

Disclaimer: Although Teresa Blankmeyer Burke has many institutional and other affiliations, the contents of this blog represent Teresa’s personal views only, and are not associated with any of her professional affiliations.