Losing My Way

I’ve been bad. Very bad. I have not written here in a long, long time. In explanation, I have a confession to make. I have become disillusioned and disheartened with disability advocacy. Not in the overall purpose—my belief in the equality of people with disabilities and my passion for creating positive change have not changed. I am disheartened more by some of my fellow advocates and my quest to have a career in the disability rights field.

When my husband was offered a job near my family in Virginia and within commuting distance to DC, I was overjoyed. Although I loved the company I worked for and passionately believed in its mission, I had felt increasingly stifled. There was little opportunity for creativity or upward mobility. Additionally, I thought moving closer to DC would be the perfect way to follow my dream of becoming a disability advocate on the national stage. Without exception, all of our friends and colleagues thought this was an excellent decision and no one doubted I would find work quickly and easily.

The first few months went exactly as planned. I reached out to the leader of a national disability organization and, after a few months of interviews and persistence, was offered my dream job: Communications Manager for a national disability rights organization. I was over the moon. However, Fate—or God, whichever you choose—had other plans. The day after I signed the employment offer contract, my contact left the organization. I am not privy to the details, but that is not really the point. The Powers That Be decided not to bring me onboard after all. To say I was devastated would be a gross understatement. Being handed your dream only to have it ripped away from you a day later was a heavy blow.

Still, we had hope. If I had gotten a job for myself within a few months—an unsolicited one at that—then surely I could land another job in a reasonable amount of time.

That was 18 months ago.

I’ve applied for at least 100 jobs since then, and have only been to a half-dozen interviews, if that. At first, I only applied to disability-related jobs, but I soon realized I’d have to widen my net to communications jobs in other fields. Still no luck.

They say that networking is the key to finding a job. With this in mind, I tried to get involved with the disability crowd in DC and nationally. In some ways, I was successful. I met Day Al Mohamed, an amazing disability advocate—and great person!—who has helped me as much as she can. I worked with her on her documentary about the Civil War Invalid Corps, which was an educational and gratifying experience. I’ve also begun volunteering with a new organization, GADIM: Global Alliance for Disability in Media and Entertainment, which has helped my outlook tremendously in the last few weeks.

In other ways, I failed miserably to connect with people. Several people whom I met at an #ADA25 event completely blew me off. They told me to contact them later. I attempted to do that. Many times. Only to realize I was probably small potatoes to them and not worth their notice. Admittedly, I have missed some networking opportunities due to the difficulty in traveling to DC from Winchester. I cannot drive and I’m an hour away from the nearest Metro stop. This difficulty could be overcome if it were part of a routine, but it was hard to get transportation on short notice.

I think I began this endeavor with the rosy-red belief that all disability advocates would welcome me and help if they could, because, of course, “inclusion” is one of our most-used words. This is a fallacy. Every group of people, even those devoted to a cause such as ours, has its cliques, inconsistencies, and hypocrisies. I am an outsider, so why should they listen to me? I was not privileged enough to begin advocating as a child, or even as a young adult in college. I was the only disabled child I knew. I went to a small college in rural Virginia, which offered a good education, but nonetheless was not a hotbed of disability activism—or any activism for that matter. I did not realize it was even possible to devote one’s career to disability work until I was 23. And I didn’t move back to the DC area to pursue this passion until I was 28. By this point, some of my contemporaries had been involved in activism for over a decade. So, I was already at a disadvantage.

The realization that the community as a whole is not perfect, that it is made up of individuals who have their own agendas and personalities, is part of what has disheartened me.

My disillusion continued because of certain disability issues. For instance, my opinion on the PFL v. IFL issue is probably not the majority opinion. Many have stated that people who use PFL are ableist, while true advocates who identify as disabled use IFL. I use PFL all the time and I proudly identify as disabled. However, being disabled is not my only identity. I am curly-haired, a Virginian, a bookworm, a history nerd, an animal lover, etc., etc. I think it is a good thing that I am not solely defied by—nor do I only define myself by—my disability. It is only one part of what makes me who I am. I can believe this and still be a true, passionate activist. Like I said, though, this is not the majority opinion and smaller voices get lost in the din of the handful of people who tell us what we should think. There have been several instances like this, where I have felt that those who have a dissenting opinion have had their voices snuffed out. More recently, Jennifer Bartlett wrote in the New York Times that she longed to be catcalled as a disabled woman. She was swiftly criticized by fellow disabled women for perpetuating sexism. If this woman wants to be catcalled and feels like she does not have this experience because of her disability, so what? She’s entitled to her own desires and should not be lambasted for it, especially not be other disabled people.

This and more has resulted in a great feeling of having lost my way. There are times, especially recently, that I seriously doubt I was meant to do disability work as a career. Maybe I’m meant just to post random news stories on facebook and hope my friends read some of them. Maybe I’m only meant to groan and roll my eyes at ridiculous Helen Keller jokes on Family Guy. I don’t know. I feel lost and alone in this, and have no idea how to move forward, or if I even want to move forward.

I am not writing all this for you to pity me, nor do I claim that I am wholly a victim in my underemployed circumstance. This blog post has been a long time coming.  Now, though, I believe that putting a voice to my feelings may help to clear my mind and reinvigorate my spirit. For, as I said in the beginning, I have never lost faith in the mission of disability advocacy, I have just lost my way on the career path of life.

Samuel Gridley Howe’s Thoughts on Blind Marriages

Nineteenth century reformer Samuel Gridley Howe is one of the world’s most famous educators of people who are blind. He was one of the first men in the United States to publicly advocate for the education of people who were blind. He also devised a way to communicate with Laura Bridgman, who was deaf-blind. The Perkins School for the Blind, the residential school that Howe pioneered in 1832, blazed a path for dozens of other educational institutions for people who were blind in the United States. In many ways, Howe’s ideas about blind people were revolutionary. In other ways, his beliefs placed him squarely in his own time. Although he lived and died before the heyday of eugenics in America,  his discussions of the marriage and intermarriage of people who were blind illuminate these proto-eugenic ideas.

Early on in Howe’s tenure as director, his views on the marriage of blind people became known. His first student, Thomas Takes, married a sighted woman. Howe believed this kind of marriage was acceptable because it would dilute the hereditary blindness in the next generation. Furthermore, Howe was more amenable to the idea of a blind man marrying than he was to a blind woman marrying. Soon thereafter, Sarah Clough and Charles Morrill, both students, wished to wed. Howe strongly opposed this union, fearing that the couple would pass on their blindness to their offspring and successive generations. He eventually gave up after numerous attempts at blocking the nuptials failed.[1]

Howe’s views on preventing the transmission of blindness to the next generation through the separation of the sexes foreshadowed later eugenic concerns about the intermingling and reproduction of “defectives.” He, like blindness professionals for generations after him, believed that separation of the sexes was an integral duty of schools as a means to prevent intermarriages and therefore to prevent more children born blind. In 1849, he set forth his opinion on the separation of the sexes:

There must be a separation of the sexes.  Surely, little need be said to prove this. In view of the present condition of society, and in view of the various objections to intermarriage among blind persons, it seems to be an imperative necessity.  I am aware that there is a difference of opinion among intelligent managers of similar public establishments with respect to the necessity of a separation of the sexes.  Waiving, however, all arguments respecting the best mode of preserving a healthy state of feeling among the inmates, whether by entire separation or moderate indulgence in each other’s society, I maintain, that, in the case of the blind, and all those who have a marked hereditary tendency to a physical infirmity, there is a stern moral duty to use every precaution against a perpetuation of such tendency through successive generations. Marriage in cases where one of the parties has such hereditary predisposition is generally unwise, often wrong: intermarriage between two persons so predisposed is always wrong, very wrong. . . This is a most unpopular doctrine to preach; it is an odious one to enforce in practice; but no one fully impressed with respect for the immutable will of God, as manifested in his natural laws, can hesitate between incurring the odium and doing the wrong.[2]

He argued that blind people themselves disapproved of intermarriage. As will be shown, there is some truth to this statement. However, two sentences later, Howe notes that other professionals do not agree with this policy, and he wished to waive all arguments concerning the contentedness of the students. This seems to be in direct contrast to his assertion that blind people themselves did not favor intermarriage. If they did not favor intermarriage as completely as Howe seems to say, then blindness professionals and students would not argue that separation of the sexes is not good for the happiness of the students. He even went so far as to say that two blind people who married each other were “authors” of their child’s blindness as if they had “gouged eyes out after they were born.”[3]

Around 1858, Howe began showing less confidence in the success of his attempts to prevent the marriages of blind people. In that year’s Annual Report, Howe noted that, despite his efforts, his students still married anyway. He wrote that, like “common marriages,” blind marriages result from “propinquity in time and space.”[4]  Along these lines, Howe recommended separation from each other, but integration with the community, in his address to the New York State Institution for the Blind on the opening of their new school in Batavia, New York. He told the audience that congregating blind people together was unwise, and that the best course of action was to let blind students interact with the broader community, but still keep a separation of the sexes within the school.[5] Two years later, in 1868, he stated that the sexes should be in two entirely separate buildings, “out of ear shot of each other.”[6] Although it is a myth that all people who are blind have exceedingly good hearing, many people who are blind, though they may not have medically better hearing, are more aware of sounds around them. Howe wished to keep blind boys and blind girls completely unaware of each other’s presence.

In 1874, two years before Howe’s death, his belief in the separation of the sexes still held firm, but his opinions on the marriages of blind people to sighted people had shifted. Howe formerly thought that people who were blind should “crucify themselves, and abstain from marriage.” However, due to “reflection and experience,” he understood that, although some people are “heroes,” most are not and would marry.[7] The sexes should still be separated, he maintained, but students should be allowed to make acquaintance with “ordinary” youth to promote “favorable marriages.”[8]

Howe’s contributions to blindness education cannot be denied. However, as with any famous historical figure, to understand the person, you must understand all aspects of that person’s thinking–the good, the bad, and the ugly.  His belief in the harmful consequences of blind marriages were not uncommon in his day. In fact, this belief was common into the middle of the 20th century. The sad part is that some people today still believe that blind people should not get married at all, or should at least not have children.

Taken from pages 18-23 of “Love is Not Blind: Eugenics, Blindness, and Marriage in the United States, 1840-1940” by Marissa Stalvey (me), ©2014, University of Toledo.

[1] James W. Trent, The Manliest Man: Samuel G. Howe and the Contours of Nineteenth-Century American Reform (Amherst: University of Massachusetts Press, 2012), 62-63.

[2] Annual Report of the Perkins School for the Blind, vol. 17 (1849), 20. Samuel P. Hayes Research Library, Perkins School for the Blind.

[3] Annual Report of the Perkins School for the Blind, vol. 16 (1848), 50. Samuel P. Hayes Research Library, Perkins School for the Blind.

[4] Annual Report of the Perkins School for the Blind, 1858, 15.

[5] Samuel G. Howe, “Address to the New York State Institution for the Blind,” September 6, 1866. Samuel P. Hayes Research Library, Perkins School for the Blind.

[6] Annual Report of the Perkins School for the Blind, vol. 37 (1868), 9-10. Samuel P. Hayes Research Library, Perkins School for the Blind.

[7] Annual Report of the Perkins School for the Blind, vol. 43 (1874), 106. Samuel P. Hayes Research Library, Perkins School for the Blind.

[8] Ibid., 111.

Where is the Line between Inspiration and Inspiration Porn?

Image caption: Black background with white words reading “Where is the line between” and the word “inspiration” in green and “inspiration porn” in red. Below left is a photo of the Capitol Crawl. Lower right is a photo of Oscar Pistorius and a little girl with prostheses, with overlaying text that reads, “The only disability in life is a bad attitude.”

I post a lot of disability-related content on my personal facebook page. In fact, if I’m not posting cute photos of my pets–they’re just so darn adorable!–then I’m probably posting about disability. I rarely get any “likes” for these posts, but I continue to post this content on the off chance that someone will read it and learn something, in addition to the obvious fact that I find it interesting myself.

Recently, I spoke with a good friend of ours who likes to give me a hard time, but has a genuinely good soul. Out of the blue, he brought up “inspiration porn” and recalled a post I had shared a while ago defining the term in relation to some news story. At first, I was a little shocked that he read the post, much less remembered it and the definition of “inspiration porn.” On one hand, this reinforced my belief that social media and advocacy can have an impact, even in a small way.

But, he did have a concern, one I believe he shares with many other nondisabled people. “Where is the line between ‘inspiring’ and ‘inspiration porn’?” he asked. He said he wanted to treat people with disabilities the right way, and have the right attitude about disability, but he was sometimes unsure of the difference between the two.

I told him that, generally, inspiration porn consists of nondisabled people showcasing or exhibiting a disabled person doing something mundane or otherwise unexceptional for the purpose of “inspiring” other nondisabled people and making them feel better about themselves and their lives.

For example:

These examples, in addition to the photo of the little girl above, are pretty much self-explanatory. People eat all the time–why should a person with a disability ingesting nutrients be inspiring? The boy in the Super Bowl ad was playing and having a good time…like any other boy his age would be doing. There are thousands of blind parents in this country who have successfully raised children. Millions of people are parents, but you don’t see their stories make it to USA Today. People with disabilities doing everyday activities should not be inspiring. And then there’s the little girl in the yellow dress. She’s definitely cute, there’s no arguing that. Nondisabled people see this and think, “She’s still smiling and she has no legs. If I had no legs, I’d wish to be dead, or at least stay in my house for the rest of my miserable life. She’s so inspiring!” In actuality, she’s just being a happy little girl. And the quote. As Stella Young pointed out, the cliche “The only disability in life is a bad attitude” is such bologna. To paraphrase her, smiling at stairs never made a ramp appear. This image appropriates the girl’s personality and experiences solely to make us pity her and feel better about ourselves.

The photo to the left of the little girl shows people with disabilities crawling up the Capitol steps as part of a protest for accessibility. To me, this image is inspiring because these people went above and beyond for a cause they felt strongly about. These activists helped create real, meaningful change that has enhanced the lives of countless people.

Not all images or news stories about disability are this straightforward. Sometimes, the line between a genuinely inspiring story and inspiration porn can get pretty fuzzy.

Erik Weihenmayer is an athlete and adventurer who has climbed to the peak of Mt. Everest, among other accomplishments. For me, his climbing one of the tallest mountains in the world is inspiring–if a little nuts. The fact that he is blind has little to do with it. On the other hand, some would argue that his schtick of overcoming adversity, combined with the fact that he is by no means the only person to ever climb Everest and only gets attention because he’s blind, makes him and his adventures inspiration porn.

A teenage boy who is going blind recently appeared on America’s Got Talent to showcase his dancing skills, which were pretty sweet, I might add. It is fairly easy to discern that the show objectified him, focusing as much, if not more, on his disability than on his dancing. But how should the average viewer react to this? I thought his dancing was pretty cool, and it was admittedly inspiring. I mean, for a teenager to receive life-altering news and keep doing what he loves is admirable. Not everyone would react the same way. Yet, I could easily be accused of being ableist for this view.

As a disability advocate, I am aware of my own internalized ableism. I’m also sensitive to the dos and don’ts of portraying disability. I could sit here all day and philosophize about what makes something truly inspiring versus faux inspiration.

But what about my nondisabled friend and others like him, who mean well but aren’t entirely sure where that line is? I usually hate the phrase “S/he means well” as it generally is given as an excuse when a disabled person takes offense after an ableist action. “Don’t be so sensitive. He meant well.” As if that makes it OK to treat people with disabilities as inferiors. However, some people really do mean well and they honestly want to have the right perspective and act in the right ways.

If a disabled person is being displayed, exhibited really, for doing an everyday activity–parenting, eating, or even graduating high school–then this is most assuredly inspiration porn.

As for those less outrageously egregious, less obvious instances, I don’t have all the answers. And if I, a person with a disability, am unsure about some things, imagine how unsure a nondisabled person can be when it comes to this issue. Let’s keep that in mind when we advocate.

Do you have any examples or thoughts on less obvious instances of inspiration or inspiration porn? Share in the comments!

A Day in DC to Celebrate #ADA25

This past Sunday, July 26, marked the twenty-fifth anniversary of the Americans with Disabilities Act. I was only four when it was passed, so I really did not experience what life was like before the ADA, but I can certainly attest to how things have changed in the last 25 years. In celebration and remembrance, events were held all across the nation last week and this week.

I was able to go to DC on Sunday to take part in some of the celebrations. Continue reading A Day in DC to Celebrate #ADA25

A Brief History of Marriage (in)Equality for People with Disabilities

Last week, the U.S. Supreme Court passed down a ruling which legalized same-sex marriage in all 50 states. Celebrations erupted everywhere, and everyone changed their Facebook profile pictures to rainbows. The decision was heralded as finally bringing full marriage equality to the U.S. Although overjoyed for the LGBT community, many people with disabilities know that it is not full marriage equality until people with disabilities can marry without restrictions or penalties.

It is important to put the current discussion of marriage equality, and especially marriage equality for people with disabilities, in historical context. Continue reading A Brief History of Marriage (in)Equality for People with Disabilities

8 Awesome Museums with “Touch Tours” for Visitors who are Blind or Visually Impaired

Many people who are blind and visually impaired are not fans of museums because the experience is very dependent on vision. Recently though, museums have begun to realize the benefits of increasing accessibility for people who are blind and visually impaired and other people with disabilities. “Touch Tours” are one way museums can enhance the experience for blind visitors. These tours are usually led by trained staff members who give extensive audio descriptions of the exhibits, and allow visitors to touch original pieces and representative models. Spain’s Museo del Prado has been making headlines for its new tours for visually impaired visitors.

Here are 8 cool US museums with “touch tours”:

1. Birmingham Museum of Art

two visitors touching art Credit: Birmingham Museum of Art

The Birmingham Museum of Art features over 26,000 works of art dating from ancient to modern times, and includes a 30,000 sq. ft. sculpture garden. The Museum offers a “Visually Impaired Program” featuring audio description, touchable original pieces and models, related music, and art-making for a full, multi-sensory experience. Drop-in tours focus on a specific aspect of the exhibits and topics change each month.

Price: Free
Times: 2nd Saturday each month at 10am, the 4th Wednesday each month at 1pm, and by reservation with 3 weeks notice
Contact: 205.254.2964

2. American Museum of Natural History

Founded in 1869, “the Museum is renowned for its exhibitions and scientific collections, which serve as a field guide to the entire planet and present a panorama of the world’s cultures.” Permanent exhibits feature dinosaur fossils like the one pictured above, rare gems and minerals, ocean life, and much more. The museum offers “Science Sense Tours” for visitors who are blind. Visitors will explore specific exhibit themes through touch and verbal descriptions.

Cost: Regular admission
Times: Monthly (upcoming dates listed on tour page), by appointment with 2 weeks advance notice
Contact: (212)313-7565 or email accessibility@amnh.org

3. San Antonio Museum of Art

Street view of San Antonio Museum of Art Credit: TripAdvisor

The San Antonio Art Museum holds a vast collection of art from the Americas, including pre-Colombian art and a collection of Latin American Folk Art. It also has a huge collection of Chinese ceramics and art from the ancient Mediterranean world. The Museum offers guided tours of the galleries, and includes touch, verbal descriptions, sounds, and even smells!

Cost: regular admission
Times: 10 am the first Saturday of each month, or by appointment
Contact: (210) 978-8138 or email tours@samuseum.org

4. The Walters Art Museum

Inside the Walters Art Museum Credit: TripAdvisor

According to its website, “The Walters Art Museum is one of only a few museums in the world to present a panorama of art from the third millennium B.C. to the early 20th century. The thousands of treasures range from mummies to arms and armor, from old master paintings to Art Nouveau jewelry…Renaissance and Asian art and a spectacular reserve of illuminated manuscripts and rare books.” Located in Baltimore, MD, the museum offers Touch Tours to groups of 5 to 15 blind or visually impaired people. Tours focus on sculptures, but may also incorporate verbal descriptions of various related paintings and other art.

Price: Free
Times: By appointment only, must give 3 weeks advanced notice
Contact: John Shields, Manager of Docent Programs, at 410-547-9000, ext 235 or register online

5. The Nelson-Atkins Museum of Art

Known worldwide for its collection of Asian, European, and American art, the Nelson-Atkins Museum of Art, located in Kansas City, offers a tactile tour exploring contemporary art.

Price: Free
Times: Only by appointment to organizations or groups with blind members, maximum size of 9
Contact: Sign-up Online for an Adult Tour or call 816.751.1278

6. The Columbus Museum

Inside of Columbus Museum Credit: visitcolumbusga.com

The Columbus Museum in Columbus, Georgia is a regional art and history museum, one of the largest in the Southeast. The museum offers a Touch Tour, which explores areas of the permanent collection, including the tactile exploration of 3D models based on 2D paintings. Music is also incorporated in these tours.

Price: Free
By appointment only

7. Intrepid Sea, Air, and Space Museum

The Intrepid Museum is comprised of the World War II-era Intrepid aircraft carrier, the space shuttle Enterprise, the Growler submarine, and the British Airways Concorde plane. Definitely a place to visit for science and history nerds! The museum offers guided touch tours of aircraft, models, and tactile images.

Price: regular admission
Times: By appointment only, with 2 weeks notice
Contact: access@intrepidmuseum.org or 646-381-5182

8. U.S. Holocaust Memorial Museum

The U.S. Holocaust Memorial Museum collects and exhibits the history of the Holocaust, from the Nazis’ rise to power, through World War II, and its aftermath. The Guided Highlights Tour, 2 to 3 hours long, features “visually descriptive language, touchable reproductions of several key artifacts, and a model of the Museum. It also provides visitors with a variety of visual aids, including a monocular, flashlights, and high-contrast black-and-white photographs.”

Cost: Free
By appointment, recommended to start between 9:30am and 1pm
GHT@ushmm.org, Online form, 202. 488.6100

This is by no means an exhaustive list. Have you been on any Touch Tours that you recommend?