Author: Lexie

The NFB and Me (Part 1): The Blind Leading Ourselves

See also part 2: The NFB and Me: The Baby and The Bath Water

In light of the #marchingtogether scandal involving sexual abuse in the National Federation of the Blind, the largest self advocacy group of blind individuals in the United States, I have been examining my relationship with the group. And…well…I’m just really disappointed, but its complicated.

In many ways, the sexual abuse scandal did not surprise me because it is by and large a reflection of what has been going on parallel in the rest of society with #metoo and #timesup. There has finally been a long needed reckoning in regards to how men treat women and issues around consent. I’m an Old, and in my youth, I did suffer some relatively minor abuse within or closely adjacent to the NFB. There was the fellow student who grabbed me from behind and my training center apartments, making cracks about my breasts, grabbing at them and not letting me go. A staff member was right there watching. And it was not until I got an elbow free and started jabbing him in the face with it that the staff member was finally annoyed enough at the situation to say “cut it out” so the student would release me. There was the whispers among the older women to us younger women at NFB events about who to avoid and who was “gropey.” Those who did not heed this advice might find themselves dodging a man whose hands wondered down your backside, between your legs, or up your chest, “accidentally” of course, when you just wanted a piece of technology demonstrated in the exhibit hall. There was an old smarmy man who was a state politician who was constantly drunk and rubbing up against us while he propositioned us to go back to his hotel room. But the state leadership had the “boys will be boys” attitude about this. And, we were told, because he was a prominent politician, we were behooved to protect his reputation. It is rare to be a blind politician and it was important to protect those who had achieved such positions.

But these attitudes of 2-3 decades ago were no different than the attitudes of all of society about sexual harassment, abuse and assault. It should be unsurprising that blind men, just like their sighted counterparts, and dealing with a long overdue reckoning. The last few years have been an era where woman have learned to collectively put our foot down and not take it anymore. We have finally been able to put men on alert. This type of behavior will now have consequences: you will be held accountable.

Certain large organizations, from the Catholic Church to the Boy Scouts to USA gymnastics and now the NFB, have seemed to be plagued by this type of abuse, though. It is important to look at what makes certain organizations a breeding ground for such things. I don’t think the general membership of the NFB is any more or less filled with sexual abusers than the general populations, but yet, when the accusations came out, I can’t say I was surprised. There was something that was bugging me about the NFB long before this problem came to light, and I am still trying to define it.

I was first introduced to the NFB in high school via my state Vocational Rehabilitation Services. Nebraska Commission for the Blind was (and still is) a state that has embraced the NFB philosophy of high expectations and standards for blindness rehabilitation. A training philosophy called “Structured Discovery” originated in Nebraska and Iowa. Structured Discovery changed my life for the better. It was a breath of fresh air, and has had a substantial impact on my success in college and graduate studies, my career and in my personal life and general mental outlook in regards to blindness. (See more about the NFB and Structured Discovery in Part 2 of this series.)

I was involved in the NFB in the late 80s and early 90s as a graduate of the Nebraska Structured Discovery program and as a college student. I went to conventions, I was involved in the Student Division at the University of Kansas. I went to the Washington Seminars and spoke to members of Congress on behalf of the NFB. I did public speaking gigs where I touted their philosophy. I argued with my professors and sited works from NFB leaders. I met and was awed with successful NFB leaders. I provided countless hours of mentorship to younger college students. I volunteered many hours to teaching braille, cane travel and tech to newly blinded folks. I saw the importance of blind collective action and self advocacy. I met and still know many great people in the NFB.

When I graduated from my master’s program, I moved to Oregon and got a job helping to organize advocacy for people with intellectual disabilities. I went to one or two local NFB meetings, but they were not really very active or organized, so I kind of faded out and stopped going. I was also working with a man with quadriplegia whose health and socioeconomic issues put him at risk for being put in a nursing home. My focus became broader across disabilities. I became more interested in working with organizations such as ADAPT and Self Advocates Becoming Empowered and the American Association of the Deafblind. Its not really that I consciously quit the NFB, I just didn’t have time to focus on it as much as I did before. Working on advocacy around “just blindness” seemed limiting when so much more was at stake around the issues of independent living and community supports and autonomy.

When my husband and business partner, Nik Petersson, and I started an assistive tech company that focused primarily on blindness skills training, we wanted our office to be a place where blind people could find community. A first step to that seemed to be getting the NFB to form a new local chapter that would be more active and centralized to our metro area. We offered up our office space to this new chapter, as well as the local ACB chapter. I have never really clicked with the ACB as I have with the NFB, so I started trying to become more involved in the NFB again.

But as society had changed in those 20 years, so had I. I now looked at disability issues through a much broader lens. I was also deafblind now and had Chronic Kidney Disease. “Just blind” didn’t describe me anymore. And through my work with advocates with intellectual disabilities, I now had a much keener understanding of the nuances of supporting people while they used their own voice. Self determination was a top priority for me in regards to the disability community. Even if a disabled person made what I thought was a mistake, I was determined that they had a right to make that mistake and learn from it without being dictated to. I started to see serious problems with the NFB’s top down structure that I had not been able to see when I was younger.

Some of my problems were purely logistical. As a Deafblind person, many programs and activities were not accessible to me. The monthly presidential address was audio only. The meetings were hard to follow. When I attended the 2019 Convention, I very much enjoyed the Deafblind division’s meeting, but I felt excluded everywhere else. I learned that the DB division had been working for years to get interpreters, live captions, transcripts and other accommodations that would allow DB folks to participate. Were DB folks even a part of the NFB? It sure didn’t feel like it. The reputation of the NFB among the Deafblind was so bad that when I was asked to start a DB division, I was scoffed at by most DB people. “What are we going to do, just sit there and be excluded? (The NFB has made some improvement about providing transcripts and live captioning in the last couple of years.)

Furthermore, the insular, top-down nature of the NFB didn’t sit well with me anymore. I had noticed it in my 20s. How there wasn’t any room for dissent. How no one really ran against anyone in leadership positions (or if there was, it was hidden from the rest of us by the nomination committee process.) How the elections seemed pro forma and performative. But several people explained to me that this was necessary to create a united front and to protect our collective organization. Unlike USA Gymnastics or the Catholic Church, many people come in to the NFB in various ways damaged and traumatized. To be blind is to be marginalized, oppressed, disregarded, looked down upon, and failed by family, school and society. Many members come in lacking educational opportunities, having suffered long term emotional abuse and ridicule, and have been stripped of their own autonomy, and having internalized the ablist messages about their own self worth and abilities that can be found everywhere in society about blind people. It was necessary to have a solid leadership and a top down structure because their were so many negative forces in the mainstream society to fight and protect people against. If it was truly a bottom up, grassroots organization, they wouldn’t have gotten nearly so much accomplished. The leadership knew what was best for us and we needed to allow them to lead us.

The NFB is not an organization FOR the blind, it is the blind leading themselves. Often we correct people when they erroneously call it the National Federation FOR the Blind. It is OF the blind, we are taught to say. And this is very important. It is in response to the myriad of historical and present day philanthropies and social service organizations run by sighted, non disabled people who did not so much serve us and our best interests, but served themselves via exploiting our vulnerabilities. These organizations spoke for us without asking, had low expectations and acted as gatekeepers to our opportunities and civil rights, often excluding us and creating artificial barriers for us even more than general society did.

As a person who majored in special education and has worked in the disability field, I know how important self advocacy groups are. The training that is offered in special education and rehabilitation programs throughout the country is abysmal. Graduates come out not knowing braille, adaptive technology, orientation and mobility, or other vital blindness skills at any level even approaching basic competencies. They are taught ablist, medical model philosophies and low expectations. These professions often attract people who want to be recognized as helpful heroes to unfortunates more than they really want to fight for equality and see us as equal partners. Self Advocacy groups, including the NFB, are vital to the promotion of equal rights and access to society. The NFB is not the Catholic Church nor USA Gymnastics who are respected and rule their domain, the NFB is the underdog that fights for scraps of power and influence. As each individual blind person is marginalized by ablism, make no mistake that the NFB is marginalized on an institutional level. And its membership is filled with a higher level of members who lack education, come from experiences of abuse, and have internalized low expectations and ablism. It is a tough gig.

Which is why I think they have created such a top heavy organization. When I first returned to the NFB after my long hiatus, I attended a state leadership conference. The affiliate president spent the first morning telling us that the NFB was in fact leadership led, the power comes from the top and not the membership, and that the main rule of the NFB, not unlike Fight Club, is that we do not talk bad about the NFB outside of the NFB. She went on to tell the history of each of its presidents in mythical terms. There are not too many presidents for an organization that is now 81 years old. There was Jacobus tenBrooke, Kenneth Jernigan, Mark Mauer, and Mark Riccobono. The couple of other very short term presidents were not mentioned. One president was the “loving” president. Another was the “tech” president. We were being dictated to how we should think about them. I had met Jernigan. He jokingly bopped me on the head with his cane when I questioned an issue involving SSDI that he disagreed with. That was the end of that discussion. Though I do have respect for some of his accomplishments, “loving” is not a word I would have used to describe him. But this was the history we were to believe without question. At the lowly, local level, we were worker bees. Our job was to increase membership and raise funds. The Leadership Conference felt more like a Dutiful Follower Conference. I was turned off.

I understand to a point the importance of creating a united front for the organization. This is Advocacy 101. In-fighting never allows you to meet your goals. On a more individual level, I know that I personally do not talk smack about any blind person. There are blind people I don’t like and who I don’t agree with, but even those I do protect as much as I can. This is just part of being a marginalized community. It is hard enough out there. If I say something to a sighted person about a blind person I disagree with, I could inadvertently contribute to a chain of events that cause them to lose their job, educational opportunity, even children. The stakes are high, and like any community that experiences oppression, we look out for one another, we protect each other. It is one of our strengths.

However, there is a line I draw as far as this goes. I would not stick up for someone driving a car while blind (it occurs often), sexually harassing or abusing someone, or generally committing any type of violent crime. And this is where the NFB, in protecting its own…sort of slid off the cracker. I knew that gropey men existed in the NFB 20 years ago. I knew that there were probably still young people who needed guidance (due to never receiving it in their own educational experience) to understand social issues around consent and engaging in intimate activity. I had no idea that Fred Schoeder, a man I admired and met on several occasions, had decades of complaints against him for sexual misconduct. I had no idea there were incidences of training center instructors assaulting minors in their tutelage. These events are beyond the pale, and it is hard to understand how other professionals I admire could let this type of thing happen. I can only surmise that they took the task of protecting themselves and the organization way too far. Accountability needs to happen.

Although the NFB is attempting to address the problem with several steps, such as partnering with RAINN to offer training and beefing up their code of conduct and complaint process, I am afraid that the root of the problem is not being addressed. And this relates to this top-down, opaque, insular, heavy-handed leadership issue. Elections and voting in the NFB have always been difficult for me to watch. They remind me of reading about elections in dictatorships. Sure, people vote, but it is not a democracy. There is no room for dissent. When you have 4 leaders over an 80 year history, each one groomed for the position by the outgoing president who is leaving because he decided to retire, you don’t have elected leaders–you have dynasties. The elections, from local chapters to national elections, have never been particularly private. Especially at the national level, there are never challengers. People who oppose certain candidates or resolutions are often retaliated against, and often loyalty is rewarded above integrity. Its not so much that the leaders are terrible people, they are often quite good at what they do and likable. But the absolute hold they have over all matters of blindness advocacy turns other promising would be leaders away and silences the larger membership. This type of atmosphere leads to a breeding ground for these types of sexual abuse scandals to fester. This abuse scandal did not happen because the NFB has an especially large number of creepy sexual abusers and pedophiles in their midst, or even that the leadership isn’t rightfully horrified by this abuse. It happened because the environment of the NFB is not a member-led, transparent open democracy. It is too tightly controlled by the top with too little trust and respect for the rank and file.

Which is ironic, because the NFB was formed because the blind were tired of service providers and the public thinking we were inferior and thus didn’t trust us to know what was best for ourselves. But the leadership of the NFB has acted with that exact same distrust and dismissal of us. Perhaps, a real member led organization, where we elect leaders democratically and really do lead ourselves, we will make a few mistakes and we will move at a slower pace, and we will take longer to get to a consensus. But even so, in the long run we will be stronger and even more self determined. And I doubt we would make this type of huge mistake that the leadership made here.

Along with the changes that are being made in regards to sexual abuse specifically, we need to look at wider reaching improvements. We need real elections, real leadership training (not follower training) we need transparency and accountability, we need multiple people to run for office, we need term limits. And as much as I like the current leadership–they have a lot to offer and they are not evil people–they need to hold themselves accountable by stepping down and letting the membership build a better leadership from the ground up. We need to really be the blind leading ourselves.

Please also read Part 2 of this 2 part series, where I discuss structured discovery and consent.

Short Film “Feeling Through” Feels Racist, Ablist, and Tired

As a Deafblind woman, I was excited to hear the buzz that was afloat about an Oscar nominated film short called “Feeling Through.” It stars Robert Tarango, an actual Deafblind man playing a Deafblind character. There has almost never been a movie with a Deafblind character, and had there EVER been a movie starring a Deafblind actor? I was hopeful that finally, my small unique community of Deafblind people would finally get a positive portrayal on film.

It took me several weeks to see the movie after its release. There was no audio described or transcript/screenplay made public for Deafblind people to be able to access the movie until several in the community complained. Then, a transcript finally came out that had several typos and seemed rushed. Finally, I saw the movie via a combination of watching the audio described and captioned version with some assistance until I could finally read the transcript. When I saw it, I was horrified and crestfallen. It was a terrible movie, not only in how it portrays the Deafblind man, but in its portrayal of the protagonist, Tareek, a houseless black teen played by Steven Prescod. (Note: Although the transcript identified Prescod’s race as black, it did not identify the race of Taranto. Sighted assistants have reported to me that he appears white.)  Although I have nothing bad to say about these two actors and was happy that a Deafblind man was playing a Deafblind part, this was the only good thing I could rejoice about this movie.

Taranto’s character, Artie, was like very few Deafblind people I had ever met and didn’t seem to represent us at all. Deafblind people are very diverse, and we have a million ways of doing things, so I did not expect that Artie would do everything exactly like me. But since there are basically no representations in media of Deafblind people, I was hoping that Artie would be a positive one. I have since learned that Artie was based on a real character named Artemio who immigrated to the U.S. and did not know braille. Although I do understand that there are Deafblind people who unfortunately slip through the cracks and do not have the same access to resources an education as most of us do, I felt like this fictionalized depiction of Artie was a missed opportunity to tell THAT compelling story of a resourceful person through his lens than the story that was told. To me, fictional Artie seemed to be a hapless and selfish character who bumbled through his tasks by nabbing and taking advantage of whatever passerby might come along, and then turning the entire responsibility of himself over to that random stranger. Although I can’t speak for all Deafblind people ever, that is really not the way the majority of us go through life.

I work in assistive technology, and what I noticed most about the film was that although Tareek was equipped with a smart phone, Artie had been completely and unrealistically stripped of any technology that disabled people depend on to access their world. In the story, the houseless Tareek is looking for a place to crash by texting his friends, when he runs into Artie, who holds out a sign asking for help. Many deafblind people do use communication signs when interacting with a public who largely doesn’t know how to communicate with us. But most of the time, we might only ask for a simple tap to indicate when a light has changed, or we may ask for a small amount of guidance that would take someone only a few minutes out of their day. Artie asks for help finding a bus stop which is fine, but then proceeds to: assume that Tareek will sit with him, tell him the bus schedule, go and get him water and snacks, handle the payment for the snacks by handing him his entire wallet, get back to the bus stop, wait with him for over an hour, wake him up when he falls asleep, tell him when the bus comes, speak to the driver for him, and generally take total responsibility for him.  Deafblind people have many methods of doing things, but I guarantee, the vast majority of us would not do it the way that Artie does it. 

Deafblind people can and do use smart phones, usually by connecting them to a Bluetooth digital braille display. Most of the same apps that are available to sighted people are available to us. We can get directions with navigation apps, read bus schedules, and call an Uber with them. But they are also invaluable to create connections between us and the sighted, hearing world. We can use our smart phones as communication devices, they can tell us what dollar bills we are holding, they can help us to flag down a particular bus, and show the bus driver where we want to go and even watch for our stop with them. But Artie has been stripped of basically all the tools that Deafblind people use for independence and was only left with a pen and paper and printing on Tareek’s palm. These are legitimate low-tech solutions that people use in a pinch, but not routinely in the middle of the night with a total stranger to get home. There are national programs that provide this equipment to most Deafblind folks, but sometimes Deafblind people don’t have access to tools and the training to use them. However, when representing one of the only deafblind characters in all of popular culture, when most of the public doesn’t understand how we do anything, this portrayal of a very unrealistic deafblind person does more harm than good.

(This photo shows a man in jogging clothes with a guide dog. He has his hands on a braille display which is held by a strap around his neck. Digital braille devices connect to smart phones and are key tool to connect blind and Deafblind people to the world.)

But the reason it was necessary to show Artie rather hapless and without tools is actually the bigger problem in this film. Artie was not so much a character as he was used as a plot device for Tareek’s redemption. The story is through the eyes of the down-on-his-luck Tareek, who takes advantage of Artie by robbing him on the sly when Artie hands over his wallet to him. I found this portrayal of a black criminal minded youth to be very troublesome and concerning. Aren’t we ever going to move past this trope of black thug youth on the streets? Can’t we do better? And the plot of the movie is the same old tired disability porn trope where a disabled person is used as a prop to inspire a nondisabled person. In Feeling Through, this is especially cringy as a houseless black teenager is pitted against a Deafblind man in some sort of Oppression Olympics. It is not the job of disabled people to inspire better behavior in others. It is really not the job of black youth to play criminals needing redemption through encountering another underrepresented person who is supposed to be “worse off” than themselves.

Activist and Attorney, Haben Girma, who is black and Deafblind, had similar feelings about this film. “Racism permeates the entire project, from failing to racially identify white characters in the transcript to portraying Black boys as criminals.” She told me that she was approached in 2018 to help fundraise for it, but that based on the descriptions and clips she was given, she was very concerned about the message that it gave to underrepresented youth. “America does not need another film portraying a black person taking advantage of a disabled man.” Actress Ashlea Hayes, who is also deafblind and black, walked away from the film with mixed feelings. She saw Tareek as mostly “gentle, kind, and understanding” and appreciated that he wasn’t a “white savior” character. But she said “The DeafBlind character did not portray DeafBlind people appropriately. The average person watch this film would assume that DeafBlind people are not independent, and capable.”

When I started watching the film, I was hopeful that maybe we would see some real interaction between Artie and Tareek. Maybe we could get to know something about their lives and how they accomplished their goals, maybe they could even help each other out (Could Artie have offered Tareek some money or maybe even a place to stay?) But instead, I was appalled to see a Deafblind man who didn’t know where the bus station was, fell asleep in the wee hours of night at a bus stop, and gets ripped off unawares by a black kid. Then, I believe I was supposed to feel warm and fuzzy when Tareek somewhat redeems himself in the end, but I didn’t. I just felt like racism and ablism, rinse, repeat. Same thing, different day. This matters because when the general public does not tend to know anything about Deafblind people, the very few media representations we get are very important. A negative or misleading depiction can cause us more discrimination and lost opportunities in employment, education, and community. If I go in for a job interview and the employer thinks of poor Artie tripping over construction cones and getting robbed without even knowing it, I have and uphilll battle to convince him that I am a responsible, aware and competent person who will not need constant caregiving just to walk down to the coffee stand.

I was hoping this film–which until pressured, didn’t bother to make itself accessible to deafblind folks–would wither and die. But instead, it has been nominated for an Oscar. How original. A nondisabled person’s exploitation of disabled people as prop for the appropriate amount of heartstring tugs is not a new thing. The 2019 documentary, titled “Code of the Freaks,” calls out tired disability tropes seen in movies by playing a montage of nondisabled actors winning an Academy Award for playing disabled people in movies which largely are inspirational porn-themed tearjerkers. Feeling Through does right by hiring a disabled actor for a disabled part, but that isn’t enough. We need disabled screenwriters, directors and producers who will make realistic films about our lives from our point of view and our reality. Crip Camp, a nominee in the documentary category, is a step in the right direction. Somehow, Feeling Through managed to sneak past the “piercing gaze” of those who are trying to make the Oscars move in a more authentic and diverse direction. My hope is that the Academy will be savvy enough to see it for what it is and not vote for it to win this category. There are much more fascinating stories out there about underrepresented communities than these same tired white, nondisabled versions of what they think our lives should be.   

A Few Publishing Updates

There are a couple of new (and not so terribly new) articles out there on the WWW from me. Check them out:

First, there is an article I wrote a while back in regards to my partner, Nik’s trip to demonstrate the product that teaches kids with low vision and blindness coding, called Code Jumper, in Qatar. This was printed in the magazine Nafath, which is a publication of Mada, a digital access organization in Qatar.

Code Jumper: Paving the Way for Blind Students in STEM Fields (You may have to scroll to page 14.)

Also, in Medium, I have published a few articles.

How Lisa Shulman Taught Me to be a Master of Time

This is about my transition to kidney patient and how I continue to learn lessons from my late high school friend, Lisa.

Can I Explain Insidiousness to my Congressperson in 5 Minutes or Less?

This article illustrates my struggle of explaining the pervasiveness of oppressive and discriminatory aspects of digital accessibility, which is very hard for the non disabled to wrap their heads around in the first place.

In Defense of Dr. Google

I explain the history of my kidney disease and how I have learned (and am still learning) to be a strong and informed advocate for myself about my health.

That’s what has been up with my writing for the last few months. I am still working on more things to come.

Deafblindness in the New Yorker

I have been interviewed by several media outlets about Deafblindness and the Coronavirus in the last few weeks, and I am quoted a few times in this one from the New Yorker.

Who is “Worthy”? DeafBlind People Feel that Doctors Won’t Save them from the Coronavirus

I find myself wondering what the purpose and interest is in these articles. But I think it is like everything in our lives. People don’t realize Deafblind people exist. I can’t tell you how many times I tell people that I am Deafblind and that is why I need X accommodation and they are like… struck dead in their tracks in disbelief that people really exist in the world and have lives and jobs and kids, etc. while being Deafblind. So, hopefully these articles possibly make people stop and think about considering us in the decisions they make when they develop policies for this situation.

Also the most frightening aspect of this for all disabled people is this notion of eugenics oriented triage and the risk that we will not get access to the same health care as others. For Deafblind people, the problem of communicating in a health care setting where people may be unwilling to allow for interpreters, communication devices, touch-based communication and other methods leads to the fear that we will be cast aside and given no human consideration whatsoever. So hopefully these articles will allow for some creativity and imagination when it comes to our community and the realization (yes, I have to say this) that we are actually worthy of health care.

Yet Another Blog

I have too many blogs, and now I have another one. Let’s see how this goes!

But first, a note on the neglected blogs.

The homeschooling blog has become a little more difficult because my kids are not really interested in my blogging  about their day to day, and I think that is fair.  I have my own thoughts I want to write about homeschooling, but it is difficult to do so without sharing kid experiences. I will think more about this. So, I won’t shut it down yet.

Skate Therapy did not go as planned. I was having such boot problems and injury problems that I had to stop. At least for now. I am pretty protective of my ability to walk, as it is so difficult to not walk when blind and not drive. So, I may be on the overly cautious side. I have not stopped exercising for both physical and mental health, but I just do boring stuff for about 30 minutes a day and there is not much there to blog about. It happens most days, I feel better when it happens, the end.

My newest blog is called Deafblind Urban Farm, which is a little tongue-in-cheek as I have such a small “urban farm.” I have become interested in all the ways people choose to have a sustainable lifestyle like going off-grid, gardening, homesteading, etc. I think changing the way we live is going to be necessary for the future. Many of us are far from being prepared or set up to live sustainably. This most especially includes disabled people. This most especially includes me. Many of us are very tied to our technology and our city creature comforts, that for disabled people actually are more survival strategies than luxuries or comforts to us. But I want to see where we fit in to that world that is coming up ahead of us. How can we be more sustainable while keeping our tech that we need to survive? How do we prevent being left behind?

So, that is where that is. I hope you enjoy the new blog. Since I have 0 skills in this area and am on a gigantic learning curve, I hope you won’t laugh too hard at my many, many planned failures and mistakes that will come. I am still writing occasionally on disability tech and civil rights for other publications, so I will continue to use this site as a collection center for those things.

I’m So Vain, I Probably Think this Post is About Me

…but it’s not. It’s actually about disability activist, Norman Kunc. And disabled people, and women, and poor people, and you, and everybody.

Being blind, I’m not a big instagram fan, but I recently started a project on instagram called #picaday2020. Its one of those stupid things where you take a picture of yourself everyday and post it. I already hate it. Why? The requirement is that I have to be in the picture. First of all, this is hard because there are no photographers in  my house. Not me, not my blind husband, not my kids who, despite being the ones that made me think about this by commenting that there are hardly any pictures of me, aren’t really in to taking lovely, well-thought out photos of me everyday.

I hate, Hate, HATE the thought of myself in pictures. I know what I look like. I am nearing 50 years old, I am middle aged, overweight and have funky messed-up eyes and a puffy broke out face from kidney disease medications. My uniform of choice is yoga pants and a T-shirt, no make-up, straight hair stuck in maybe some kind of random hair thingy. If I think too hard about it (which I try to avoid) I am kind of grossed out by myself.

Nationally-known disability rights advocate, Norman Kunc speaking at an event.

But then I think of something Norman Kunc, who has cerebral palsy,  once said when I met him years ago at the University of Kansas. I am severely paraphrasing here, but he said something about how when he hears his caregivers (usually women) talking negatively about their own appearance or weight or clothing or hair. He thought, I wonder what they think of me and what I look like when they think this about themselves? How can they really treat disabled people whose appearance is not typical as worthy and equals when they are so critical of their own appearance?

It made me think. There is something that we don’t talk about much in the disability community or in any community, even though I think it severely affects how we have been treated. Beauty-bias. The appearance of us. Of course this bias goes beyond disability and cross-sections race, gender, class, etc. But I think it especially affects the disabled.

The disabled were disproportionately affected by the so-called Ugly-laws, where people deemed unpleasant to look at could be arrested off the streets and put into institutions and almshouses indefinitely. It was illegal to be ugly, deformed or otherwise unpleasant in appearance in public for many decades. One of the last places to still have and ugly law (till 1974- my lifetime) was in a place where I grew up, Omaha, Nebraska.

I first encountered the consequences of beauty bias when I was growing up there. I had one of those mothers who had perfect hair, perfect nails, a perfect wardrobe, and who would rarely go to the mailbox without being appropriately made-up. When I was around middle school age, my hair started a phase of growing into frizzy kinkyness. My mother hated it, and would make me chemically straighten my hair and wrap it in old fashioned curlers every night before bed. I would sleep in them all night long. Once, my mother and sister were going to go on a trip to visit my glamourous aunt in Arizona. I couldn’t go, she said, because there was no way to take all my hair nomenclature on the trip. “I’m sorry,” she said, “But your hair is kind of like a handicap.”

I am on the far right next to my sister and mother. This picture was taken sometime in the midst of the Contact Lens/Frizzy Hair Wars

Even then I knew that was crazy, but then I was less sure about  my actual “handicap.” I was in the midst of the years long Contact Lens Wars. I had very thick, funny looking glasses. My mother said they scared people, and so she wanted me to wear contacts simultaneously with more normal looking glasses. I had to wear two different pair for this to work. But I did look like a more regular glasses-wearing person. I never adapted well to contacts even after multiple tries. They were very painful and caused red rings around my pupils. But, the message was clear. My pain, how well I could see or function, how much money it costed, or trouble it caused paled in comparison to “looking normal.” This was the message I learned and did not question.

Once, in college, I went to a frat party with my “hot” friend. I had recently had eye surgery and I think my eye was extra wonky that day. Some frat guys we didn’t know shouted, “Hey Tracy Lords! Why didja have to bring Hatchet Face?” I did not understand the reference until I watched the zany John Waters movie “Crybaby.” Oh, I guess I am Hatchet Face, the ugly one with the screwed up face.  But I liked Hatchet Face (played awesomely by Kim McGuire) in that movie. I decided to make her my own. Hatchet Face had style and she did not give a fuck. And she had cool friends who also did not give a fuck. She and the overweight Ricki Lake were besties with the beautiful Johnny Depp and the hot blond Tracy Lords. I can run with that crowd. I can have that style. I can own Hatchet Face.

The cast of Crybaby.

So, I struck out on what I called the “Celine Dion” philosophy. My dad once said Celine Dion is unattractive, but does the best with what she has. (I don’t think she is unattractive, but I got his point.) So, I was going to do my best with what I had. I had great hair that I dyed different colors (I had learned to work with the frizz by then in more realistic ways than my mom had.)  I worked out and had a decent body. I had lots of cute clothes, jewelry and make-up. I abandon all contacts and glasses, but I replaced them with a cute guide dog. I still had funky eyes that didn’t focus quite right, with too many red scars in them from surgeries, but I was doing it all with what I had. It was fun.

Me sometime in my 20s when I was all about overcompensating and being cute. (Being in my 20s certainly helped with that.)

But then once I applied for a job. Business suit, professional heals, hair, make-up, etc. And I heard later from a coworker with connections that I didn’t get the job because of my bloodshot eyes. “He thought you were drunk or on drugs.” my coworker said, ” and when I explained about your eyes he said it didn’t matter, because other people would think you were on drugs so there was no way you could work there.” I wondered how many other jobs and opportunities I had lost because of this. Something I could do nothing about.

Over time, I started to realize how repulsed people are by the differences in appearance caused by disability. Once a person gave me a ride to work and saw my boss through the window, a man with cerebral palsy who uses a wheelchair. He went off on how gross the guy was and how it made him sick to look at him. Why? I asked. He is just an average looking guy in average clothes. What is the big deal? But LOOK HOW HE MOVES! he said, referring to his spasticity.

Just a few weeks ago, my husband and I went to a parent’s night event at my son’s school. As we sat down at those picnic style cafeteria tables, I said a friendly “hello” to the parents sitting across the table. The man said to the women, “I can’t eat here” and the whole family got up and moved down to the next table. My husband has what Independent Living pioneer Ed Roberts would probably call “buggered up” eyes. They are atrophied and it looks like they are shut or that he doesn’t have eyes. He has a large scar on his chin from the same motorcycle accident that blinded him, and some minor paralysis in his face that makes his smile look a little odd. Whatever Hatchet Face drunk eye look I have, he is often treated much worse than me by strangers. When we are together, we seem to be more than some people can take.

My beloved husband, Nik, who I find gorgeous in his own way. (Also pictures is our then 1 year old son and 6 year old son.)

Disabled people often have physical aspects that are not typical and beyond their control. Beyond whatever actual and real discrimination that all disabled people face, those with atypical appearances face much more bias and derision. Sometimes, when I hear about a blind person who has had considerable success, I make a guess that they are typical looking to good looking, and I am almost always right. Some blind people do not have atypical features and can be very typically attractive. And quite frankly, they can often be rewarded with better treatment, more opportunities and less bias.

So, we ask ourselves, what is our responsibility as blind people to make others comfortable with our appearance? Obviously, appearance means something and I used to cringe more than I do now when I met a blind person who had no clue as to how to do their hair or wear matching clothes (which has more to do with low expectations and lack of opportunity than appearance at its core.) There is the Stevie Wonder sun glasses look that was a hack many blind people used in the ugly law days. (Some blind people also wear sun glasses because they are very sensitive to light.) There are prosthetic eyes, a version of which can be worn even if you have eyes. I have had many friends that wear these hand-painted scleral eye prosthetics. There is plastic surgery. All these options can be very expensive, have health risks and can affect functioning.

At what point should people be expected to accept us? Sure, have your second look, your double take or whatever, but then…how hard is it to just get over it?

In about my 30s, other elements started to come into play in my decisions about how far I was going to go to please other people with my appearance. My chronic kidney disease became more of a thing. I had to ration my energy levels. I had kids, I worked multiple jobs. Taking a shower became a thing I had to budget my energy for. Certain things, like nail polish and cute clothes, went by the wayside. For a time, I had babies in diapers and a job cleaning urine and ostomy bags. I was a mess all the time. My motto became “neat and clean. All I can promise is neat and clean.” I bought a bunch of Hanes T-shirts and scrub pants. I showered daily, I changed clothes when they were soiled, multiple times a day. That was it.

Here I am in my caregiving role with my twins in my These Hanes T-shirts WILL BE CLEAN days.

And that remains to this day. I still like to dress up and wear jewelry and make up on occasion. I still understand and appreciate that other people have fun with it. But I have been fortunate to be able to arrange my life to work mostly from home. This allows me to be as productive as possible and free to do the things that I want to accomplish. But it also means that I am not going to spend two hours flat ironing my hair and doing my nails to just walk upstairs to the computer. With kidney disease being much more of a factor than blindness at this point, I have to ration my energy and that means that I cannot afford a large budget of energy for vanity.

And I know what this means in this era where everyone is online and looks fabulous. There has been a sort of beauty inflation going on. Now you don’t just paint your nails, you decorate them with works of art. Now you can’t just throw on some sandals unless you’ve had a professional pedicure. Now you don’t just pluck a stray eyebrow hair, you get them threaded. Now you don’t just dye your hair some natural color, you dye it a rainbow of colors regularly. Now Kim Kardashian gets her hairline lasered and everyone has breast implants, butt implants and wears Spanx. Now not just the odd celebrity has “work done” everyone is expected to. Now new boxes of clothes come once a month and you can’t wear anything twice.

But disabled people largely get left behind. They (along with other marginalized groups) cannot afford to spend X amount of hours in the mani/pedi chair and X amount of dollars on the newest 5 second fashion. Many cannot get “work done” or get things like prosthetic eyes due to health or financial barriers. My friend who is quadriplegic and sometimes does not have enough care hours available to shave and cut his hair, often says how much better he is treated by medical staff, caregivers and others when he is clean-shaven and with cut hair. Hard decisions about prioritizing energy and time can impact personal appearance, but instead people often look upon grooming differences as a lack of competence or a character flaw.

Function takes precedence over form when you are constantly trying to keep up your function in a world not made for you. I used to ride the bus crumpled up against strangers and then walk over a mile to work in the Oregon rain regularly. When I got to work, I was the one who looked like a drown rat in heavy boots while everyone else stepped fresh out of their cars. I did not have room or the ability to carry a whole new wardrobe to change into when I was already carrying a ton of adaptive equipment. Even when I tried my best, I still felt left behind in the world of appearance.

Mostly, I don’t care too much about all of this. I am much more likely to get pissed off when I see one of my friends getting treated poorly because of the way they look. But I would like to center for others and myself this idea that people have dignity and self-worth no matter what they look like or how they choose to decorate themselves. I do not want anyone to feel they have to apologize for not measuring up to some appearance standard. As a small statement of that, I wanted to put myself out there on instagram and not apologize for my own appearance anymore.

My life is really good right now. I have many blessings. And I wanted to somehow share those and appreciate them myself while also being bold enough to be the self accepting person that Norman Kunc expects and deserves. I am a middle aged woman who is deafblind and has kidney disease. My eyes are scarred with surgeries and my face is puffy from kidney medication. I’m a bit fat. I often can be found in yoga pants. But I am clean and neat. And I am being as productive as I can, while enjoying all the good things my life has to offer. This is what I look like.

This is the picture that inspired the project. I am HAPPY here. I have my kid and my dog and my husband and its Christmas and we have our house and presents and good food! But I can’t show it to anyone because I maybe look FAT!

In my instagram pictures, I have tried to highlight every day a “blessing” in my life. One day it was a movie with the kids, the next it was braille and the knowledge and equipment I am so lucky to have access to, another day it was my guide dogs, another it was that I still love to exercise and do things like yoga, and another it was friendships. I will try to improve on the photography but I cannot promise anything. But 25 years ago Norman Kunc told me I was being a hypocrite about my insecurity over my appearance, and I am going to finally stop that right now.

October Odds and Ends

October was an extremely busy month. I’m just finally catching my breath. We started with a teen retreat, then my twins met their biological father for the first time (he found us via DNA testing in May and we had corresponded since then. They have known many of their donor siblings for years, but meeting their “third dad” has been a bit of–a positive, but still–a whirlwind.) We had NFB convention presentations, other miscellaneous presentations, my family visits, Halloween events, I got a new Braille Display to get used to, My partner, Niklas Petersson, went to Qatar at the last minute for a week, I was sick with a respiratory infection for about three weeks, and now I want the most boring November ever.

But backtracking, I had a couple of published things I wanted to post here.

First, I did an interview with the disability activist and blogger Mariah Hudson Nichols. I am really enjoying her blog. Check out my interview and stick around for the rest of her blog.

Disabled Moms Interview Project: Lisa Ferris, Deafblind Mom

Second, I had a column published in the Rooted in Rights blog. I have worked with them before, but I learned a lesson here. I wrote this up several months ago and sent Emily Ladau a draft to see if she was interested in it at all. She said yes, and that she would like to print it in October for Disability Employment Month. …And then, I promptly forgot about it. I had meant to go through an editing process with her and shape it up a little, but lo-and-behold, one day it was published as is. I learned in my freelance career that maybe it is best to NOT turn in an article before being pretty sure that it is edited to my satisfaction. That is my mistake, and the typos are mine.

“Essential Functions” on Job Postings Creates Barriers for Employees and Employers Alike

Third, Nik had a story in Al Jazeera about his trip to Qatar where he demo-ed educational equipment at the Qitcom convention. The story is in Arabic, but I will try to put a link of it through google translate for you (which makes it sound odd, but better than nothing if like me, your Arabic isn’t up to snuff.) I hope to write about his trip (kind of from his point of view, since he is not a writer) soon. It was fascinating even from my perspective as a bystander.

Nik’s Al Jazeera Article (Arabic)

Nik’s Al Jazeera Article (Google Translate URL)

Here is to a nice and slow, uneventful next few weeks!

Homeschooling

I’m attempting to wake up the homeschooling blog, which has been almost dormant. I have kept a pretty basic yearly summary of what the kids have done each year. There are some challenges there, as well as some places I could go with it. In this homeschool blog post, I try to round up the ideas floating in my head about it.