Lying on my bathroom floor, the ADA and Haben Girma

I had crawled-hands and knees-to the bathroom, feeling my way across hard, cold tile. I broke my foot the day before and though I had been provided crutches, they were very hard for me to use comfortably since I am also blind. Crutches took away my hands, my ability to use my white cane, dog, or even feet to find my way. So in my house, I found it easier to just crawl everywhere. My knee was getting sore, though, and after I used the bathroom, I decided to just hop over to the sink on foot in order to wash my hands and get a drink. I grabbed-lightly, I thought–onto the sliding shower door handle for balance, when


The shower door handle broke off, sending my painful, broken foot instinctively to the ground to protect my fall, which shot horrendous pain all the way through my body, I toppled over, slammed my head into a wall I did not see, and crashed to the cold tile. I lay there waiting for the pain to subside, hoping I handled further damaged an injury that was already going to keep me shut in the house for weeks. Unlike others on crutches, without my ability to drive a car or use my guide dog and walk the 1/2 mile  to public transit, my life was at a complete stop.

It was not a set back I could really afford, but then, none of them ever are. I was deaf blind with three children. I had two jobs. One as a caregiver for my quadriplegic family friend that lived down the street (now out of my walking range) and the other was to support my husband in our fledgeling business that provided adaptive tech training to people with disabilities. Although it was still the end of summer now, thankfully, I also homeschooled my twin ten-year-old boys and my 5 year old boy. We had taken some time this summer to do some house reorganizing, carpet cleaning and painting. And currently, all of the bedroom furniture was stuck in stasis in my living room, waiting to be either sold, or assembled and put back into place. Without my help, my husband could not do it on his own, and so there is stayed. My husband, also a blind nondriver, not only had to take on all the kid duties, housework and laundry, but he also subbed for me in my nighttime caregiving job, all while working in our business with now minimal help from me. He was working 20 hour days, seven days a week. I was crawling to the bathroom. I could not even take my guide dog out by myself.

I was super mad about the foot. We didn’t have a lot of money, and the foot, my lack of work, etc. would set us back. When I broke it, I had to take a cab to urgent care, when the cab took over 30 minutes to come pick me up, I knew that urgent care would be closed, and so in pain and not thinking all that clearly, I told him to take me to the nearest ER. I know that cabs do not like to take people to ERs, and in this smaller hospital, I would have an easier time getting there from the main entrance and it would be quicker than going to the larger Trauma Center that would take all night. My husband had to work the next day, and I had to get back home. It wasn’t until after I had been Xrayed, bandaged up and blood-tested that I realized that my HMO was probably not going to pay for this because I went to an out-of-network ER without consulting my primary. I did not get home until almost midnight, and when I got out of the cab on my new crutches, I realized that I had no means to find my way into my house. I did not know where the curb was, nor the gate, nor the steps. I had no hands. Thankfully, my husband met me outside and verbally talked me in the house.

Today, I was supposed to go to my primary doctor to talk about a lump I had found in my armpit. But that was put off. I just couldn’t get myself there and was still tired and in too much pain. I knew that my broken foot, which had occurred when I just took a small, silly trip  down my stairs, was probably due to my having kidney disease, which can affect bone density. I had stage IV kidney disease, the stage of the disease when dialysis must be considered soon. It affected everything I did. My energy level, my diet. My plans for the future. For the past few years, I have had a very acute and clear sense of my own mortality. My number one, above all else goal has been to stay as healthy and functional as I can; to LIVE until at least 60. I am 45. I needed to get my kids grown and my husband to some type of secure retirement. I needed until at least 60 to get that done.

As I lay on my bathroom floor, I was depressed. But my ten-year old, who came running after he heard the crash and the requisite curse words, kept bringing me little things in an attempt to make me feel better. He brought me a glass of water, then a cookie, then some food, then my iDevice. I told him I was fine, but I was just going to lay there a bit until I felt better. As I lay there, my acute despair faded into exhausted ambivalence. Still, I did not feel like moving, so I picked up my iPhone and started surfing Facebook.

President Barrack Obama is leaning over a table typing on a keyboard while Haben Girma reads his words on her refreshable Braille device at the White House.

President Barrack Obama is leaning over a table typing on a keyboard while Haben Girma reads his words on her refreshable Braille device at the White House.

There, near the top of my feed, my deaf blind friend Haben Girma had posted a bunch of pictures of her visit to the White House and with Obama. Haben and I were not really close friends, but we had the deaf blind bond. She had found my blog, years ago, when she was an undergrad at a private college in my town. We tried a few times to get together, but it didn’t work out, mostly due to my limitations and so we remained mostly online buddies.Haben,



whose family immigrated from Eritrea a few years before she was born, was becoming a star. She was the first deaf blind graduate of Harvard Law School. She had gone back to Africa to do community work and build schools. She had traveled the world. She had done Ted talks, spoken to Google, and this wasn’t even her first visit to the White House or to meet Obama. She is young (18 years younger than me) and beautiful and smart and energetic. She even does ballroom dancing and has an active social life on OKCupid in her spare time. She is amazing.

Almost daily, on my news feed is a post about one of Haben”s accomplishments. And also, some of the crowd she runs with as well. She works for a large law firm that specialized in disability social justice issues, and she is in the thick of the current political and community organizational climate right now. I was always very happy and excited for Haben and the work that she was doing. To see President Obama conversing with her using a bluetooth keyboard and her refreshable Braille device gave me a little chill of excitement. I am always happy and supportive for all that Haben accomplishes. She is the Next. Big. Thing. And she is doing good work that does nothing but benefit people like me.

As I lay on my bathroom floor, though, reading about Haben and President Obama and Haben and Sen. Tom Harkin and Haben and Vice President Biden, et al. I was jealous. Well, I don’t know if jealous is the right word. Because I don’t feel any ill will towards her and her accomplishments. I don’t feel like she doesn’t deserve them. I feel like it is fantastic that she is getting this recognition. Its more like…sadness. Sadness that I can’t use all of my skills, talents, and drive like she has been able to. Sadness that I am a 45 year old impoverished mom of three, deaf blind and kidney diseased, laying on my bathroom floor, stuck in my house with a broken foot. Sadness that I never found a way to utilize all the gifts that I had to do all that I could do.

I could do what she is doing. Well, maybe not exactly how she is doing it. She is much more extroverted than I am. But I am smart enough and skilled enough. I would possibly find my niche in journalism or writing, rather than law. Although I have no doubt I could have made it through law school. I don’t know the circumstances of her going to private college and then Harvard. I did not come from the kind of family that could afford that. And it never would have occurred to me that this was within the possibilities of what I could do. Now, I know that I could have at least tried for things like that. But it just never was in the realm of possibility for me. One of the best things about Haben is that she is so damned entitled. I don’t mean that in a spoilt-brat, undeserving sort of way. I mean it in a good way. I don’t think it ever even occurs to Haben that she could not go after these things. She has that mentality that I see when I read an autobiography about a very successful white, hetero, able bodied male. Take the most recent autobiography I have read, Jimmy Carter’s “A Full Life.” I have much respect for Jimmy Carter, and he is very obviously a hard-working, highly intelligent man. But his bio has that white male thing going on. It just never occurs to him that there may be two many obstacles and barriers to  his success. He just assumes that success will happen. Haven has this, too. But she is a black, deaf blind woman. Its amazing. She is fearless. Her mother walked for weeks out of war-torn East Africa to refugee camps and then to asylum in the US. Maybe that is where it comes from. There is no conventional wisdom to follow. If you have to do that, you might as well do anything you want.

I have always felt like so many things have been holding me back.

Now before this turns into an “I coulda been a contender!” sorrowfest, let me just say, I’m not on the floor anymore. I got up off the floor eventually, asked my quadriplegic friend to lend me a wheelchair, which works much better than crutches for me, and although still not quite able to do and go all the places I could before, I am filing my broken-footed days with chores and jobs I can do, and being pretty resourceful about it if I do say so myself. And my husband, who is awesome and has a lot of Habens energy, entitlement and fearlessness, is doing amazingly at filling in the gaps. This is what we do. We are good at getting things done and we GO ON. Everyday, I am one day closer to my goal of 60, my kids raised, and my husband set up. And i even entertain the possibility of maybe a kidney transplant, maybe cochlear implants or improved deaf blind adaptive tech,  life after 60, travel, published writing, living to a happy, ripe old age with my husband and grandkids. I can be entitled, I know it could happen. So, a pity party is not what I am trying to do here.

I guess I am more looking at the “whys” and “hows” of it. How there are Habens, and there are Nik’s (my husband) and there are D’s (my quadriplegic friend) and there are  people like me. And how much is really in or not in our own locus of control and ability to change, how much could we as a society change so that people can utilize their life to its highest purpose and value, and how things that cannot be controlled can be dealt with as to not sideline someone’s full potential.

Take D, for starters. D was a promising young kid who had a car accident and had a spinal cord injury at age 17 which changed everything. I met D over 20 years ago a coupled of years post injury. At that time, he was still a bright, promising young kid. He is wicked smart in maths and sciences, he was a hard worker and very determined to prove himself. He has also been placed by just about every negative medical side-effect that could happen to a person with a SCI. 20 years ago D was going to college and we went out and on trips and had fun. The medical stuff broke in maybe…a few times a year. Now, medical stuff and survival consume every second of his existence. He has been essentially “bedridden” since December of 2012. Christmas, 2012 was the last time he visited my house and seen his cat (who lives with us now) . He has spent probably over half of the ensueng years in nursing homes. He is in his own apartment now, but he rarely gets out of bed, and when he does, it is usually to take an ambulance by gurney to a medical appointment. Much of D’s medical situation is no one’s fault. It just is. But so much of it, and the work he has to do to keep up with it all bureaucratically (fighting for every catheter, every drug, every hour of attendant care, every right to stay at home) is a huge burden time and energy wise. He is still smart and most of the time pretty with it. But I always wonder, with better healthcare that he did not have to fight tooth and nail for, with a society that valued him even if he cannot walk or work full-time, what would his life be like? How much better, health wise, could he be? He has now been isolated so long that he shows signs of sensory deprivation problems. Once, for weeks, he heard a song in the walls of his apartment. For weeks he had Nik and I and the kids turn on and off everything, search for cords and wires, turn off and on fuses…it was maddening. None of us could hear what he was talking about. All of us thought it was some level of sensory hallucination. We told him that. He kind of believed us and kind of didn’t. We kind of believed him and kind of didn’t. His brain starts to work differently now. It can focus on different things. It is still just as smart, just as resourceful. It needs something to do. For weeks, the something his brain went to great lengths to do was to find the source of this sound.  With more, easily accessible stimulation, what could that brain accomplish? He is still in there. He still has power and value. His particular circumstances allow him to think in a different way…very in the moment…very compartmentalized and analytical .There is diversity; value there. It would be nice if so much of it was not wasted on hours spent convincing 5 insurance companies that he is not trying to cheat and get more catheters than he “deserves.”

The main difference between Nik and I is that Nik has a pile full of energy that I don’t have, most likely due to kidney disease. If you are familiar with the “spoon theory,” Nik probably has 4 times the amount of spoons as I do. But still, because of disability stuff like lack of good transit, information access, and just all around equality and respect, his energy does not take him as far as a sighted persons. Some things about being blind are always going to take more time and that is just the way it is. But so many things could be made more efficient and accessible for blind people and utilize all of their resources and energy more effectively if people just believed in them in the first place. Enough to put value into making things accessible.

“Accessible” and “Accommodations” are words that have gotten coopted as “special things for the disabled. ” Usually thought of as lesser, more of a hassle, and optional. I have to remind people that everything around you is an accommodation that makes things accessible for you. If you get a desk, a chair, a computer and monitor and a health plan at your job, all of these things are accommodations. Traffic signs, fire and police services, painted lanes on the roads… all of these things are accommodations that make society accessible for you. The only difference about disability accommodations is that they  may look different or be a different type. If you get a computer monitor for your job and your blind neighbor gets voice software. those are both accommodations that have been provided so that you both can access your screen. One is not a special entitlement or privilege. It is just different type of the same access. This is why the Americans with Disabilities Act.  is a civil rights law, not an entitlement law which seems to be very confusing for people.

Haben was at the White House this last time to celebrate the 25 anniversary of the ADA. The ADA was a landmark law that promoted civil rights for the disabled. It has also been a very troubled law. It caused some breakthrough improvements in architectural design and transit design. It has raised awareness about disability as a marginalized classification and gave people at least some leverage to fight for their civil rights. It even gave Haben her chocolate cake (see her TedTalk). It also has been completely watered down by the Supreme Court and has no real enforcement mandates except civil courts. It has not improved the rate of unemployment or poverty among the disabled. And like the Civil Rights Act before it, it has not necessarily changed hearts and minds and made people less ignorant nor discriminatory against the disabled. These things take time. It will happen.

Haben is 18 years younger than me. When I finally was able to meet her, as usual, I had my health limitations and I was very sick with an infection. Still, we sat in her hotel room for a few hours and tapped out to each other on our devices to communicate. She made me feel old with her dating stories and her young mentality. In a good way, though, not in a “get off my lawn!” way. I was 20 when the ADA was passed. She would have been 2. When I was her age, it would have been very difficult for two deaf blind people like us to even be aware of each others existence, much less communicate with ease using that kind of technology. Her youth gave her tools I did not have and a freedom I did not have.

I remembered back when I was in grad school and I was given a laptop computer by my unversity that talked and I was able to take notes and tests on it and write my thesis on it. An older blind person I met scoffed in an amusing way at me when I told her how I was doing my work. She talked about how, in her day, blind people had to hire readers to crawl through the stacks in the library and read as they transcribed notes in Braille. Then, they had to type out their papers on a typewriter they could not see. Any mistake they made meant starting a whole page over again. Footnotes were a nightmare. But there were college grads back then that did it and I have nothing but admiration for them.

We, as disabled people, need to know our history and where we came from. One hundred and fifty years ago, D would have died instantly. Nik and I would have probably been institutionalized our entire lives. 100 years ago, we may have graduated to an almshouse or sheltered workshop of some sort if we were very lucky. Or we may have been relegated to a lifetime of sitting in a rocking chair in our parents house with no prospects. 50 years ago, there was no guarantee that we would have gotten an education and could have been pulled off an airplane or bus if the staff wasn’t comfortable with us. D may have lived, but probably not for long, and probably would have lived in an institution. If he did live in a community setting, he would not have been able to go very many places due to architectural barriers. Just over 25 years ago, in my lifetime, we could have been denied college entrance, job applications, services such as gyms, clubs and other community services, health care such as a kidney transplant, entrance into public places, and books, signage and other information access. I could have been denied fertility treatments and my children could have been (more easily) taken away from me just because I was blind. D would not have had the right to ride the bus or take a cab, have an accessible apartment (still very hard but at least within the realm) and even certain life sustaining health care.


We have to remember who came before us. People in wheelchairs CRAWLED up the inaccessible capital steps. They planted themselves in front of inaccessible buses. They picketed and picketed for rights to college textbooks on tape and e format, for the SATs to be made accessible, and for job accommodations and rehabilitation training to be provided. How Haben was able to get through law school at Harvard in fantastic. She had access to a much huger selection of accessible written material than the blind students before her. She had access to intervenors or SSPs (support service providers) that gave her cues to visual and auditory info all around her. Outside of the exceptional circumstances of Helen Keller, this was unheard of in my generation. She had all kind of technology like smart devices and blue tooth and refreshable Braille to allow her to communicate in class. and laws to stand behind when things got tough. She had one thing I did not grow up with. She knows that she has a right to these things and EXPECTS these things. It is fascinating to see what this next generation, equipped with all of those things, are going to do with it. They will take us to the next level.

Marginalized communities are amazing to think about. Think about the black community coming out of slavery. They were kept from literacy and civics training, they were turned out of slavery with little resources or direction after being trained for centuries of learned dependence. They had their social systems and families ripped away from them, and yet they persevered and persevered and keep persevering today. John Scalzi talks about white, able bodies, hetero males like himself being able to live life on the “easiest setting” in his video game analogy. Many minorities started out without even having access to the controls of the game, nor being able to read the directions and then won anyway by starting on the hardest level. Disabled people came from a history of being denied education and healthcare, jobs, and money. They were stuck in institutions, basically prisons with no way out. And yet they got out and they passed it on to the next generation.

I did not even have a legal right to an education until I was seven years old, when the Individuals with Disabilities Education Act was implemented. I started college in 1988 when (at a private college I attended for one year) had no legal mandate to educate me or provide me books. I came of age when the thought of having a Civil Rights Act for Disabled People was not even something that most people would understand. Things are so different now. It is easy to sometimes forget where things were and how much we have to thank those who paved the way.

I don’t know if I will ever meet the president or write a book or live past 60. I do know that I tried to take full advantage of what those who fought before me gave me. I graduated college with a graduate degree, I have pretty much always maintained a job or two or three since I was a teenager. I have my own family, we live independently and manage our own lives. One of the smartest and riskiest things I did was to have kids and navigate through a bunch of crap to KEEP them when I was threatened that they would be taken away. We take transit everywhere and with my borrowed wheelchair, I know that I can get on the bus with it. I worked for 21 years advocating and caring for D and probably not only helped keep him alive but kept him out of a nursing home for the most part. I have helped countless, and I mean countless disabled people apply for services, fight through the client assistance program, get IEP services, get out of nursing homes, get adaptive equipment and find training for it. I have adapted to my own progressive deaf blindness by getting skills training and learning to use the latest adaptive equipment and advocated for myself and others to get the best equipment available and not some castoffs by people who don’t know the difference. I have kept kids with disabilities in their own homes and schools by teaching their parents the laws. I have protested and signed petitions for equal treatment and representation. I am raising my children, and influencing their friends to understand the true value of humanity and diversity. I  have done, and am doing my part. I am extremely lucky to have had the last generation pass the work and progress on to me and I am honored to pass it on to the next generation of Habens and others who will take it further than I could ever imagine.

Shit, damned. It is getting harder. Bu there is so much more to do and that I can do. And sometimes, because of choices I have made to have and raise my children and keep my commitment to D, I do not have the time and energy I would like to devote to it. Also, I am getting sicker and more disabled by the month. And although this makes it even harder to have time and energy to devote to this work, it also makes me stronger, more resourceful, and a more diverse thinker as I have to keep coming up with unique and meaningful ways to participate in the world in the ways I want. If that means I do it deaf blind, on dialysis, with both hands caring for a quadriplegic or even laying immobile on my bathroom floor, I will.

Intersections: Me, Disability, and Caitlyn Jenner

Betty Janet Skinner, a disabled transgender woman, was murdered in her assistive living residence in 2013

Betty Janet Skinner, a disabled transgender woman, was murdered in her assistive living residence in 2013

So, I’m fortunate to have a bagful of white, straight cisgender privilege, but one of the best things about being in the disability community is how that marginalized experience can give you insight into other marginalized populations. You don’t know how it feels to be them, exactly. You don’t know the ins and outs of their specific issues and live them at the level they do. But you do know how it feels to have a cultural narrative about people who are like you be so untrue and damaging as to permeate almost every aspect of your life.

There are things I don’t know and understand about transgender issues. And if and when they appear in this post, I want to apologize up front and, if you have the patience and inclination, I invite you to school me where I show my utter Don’t Have a Clue-ness. Also, I want to iterate that no matter what my understanding (or lack thereof) is of transgendered folks I fully believe that they should be treated with respect to their chosen identity and with the names and pronouns of their choosing. I generally want people to be happy, so I am very happy for them if transitioning genders makes them happy. I feel no hate, discomfort, nor disdain when I interact with or see a transgendered person in the media.

Ok, but here it goes. Something bothers me about the progressive cultural narrative of transgenderedness. It intersects weirdly with, I guess, the disability mindset. It’s the “I’m just not comfortable in my body” or “I was born in the wrong body” thing. You know where this is going…

I once talked with disability advocate Norman Kunc, who has CP. He was telling a group of us that when his caregivers chat with him, it is really bothersome for him if they start a lot complaining about how they think they are too fat, their hair is too thin, or they don’t like something about their body. He said, if they are so critical and judgmental of their own bodies, what must they think of mine? He would let them go if he started to feel too uncomfortable with it. Why deal with the idea that the person who is helping you with intimate things loathes your body just as much or more than her own?

My eyes are screwed up and they look it, I suppose there may be some plastic surgery that might be able to fix how they set in my bone structure and set them more evenly. But the actual eyeball scar tissue, there is nothing to be done. It doesn’t bother me. I don’t care. Was I born with the wrong eyeballs? I do’t feel like that. Then, we get into the “cure” problem and disability. Disabled people tend to reject the overall “everyone should want a cure” mantra that lionizes those who never quit searching for a cure because they don’t want to imagine a world without people like them in it. They (and I) are so attached as disabilities being integral to their sense of self, that they cannot imagine changing that. I mean, I suppose I could get an eye transplant if that was possible and I would get over it if I were forced to. But what if you have something like autism and everyone wants to separate you from the disease? Where does the disease stop and you start? They are one and the same.

Yet, if I say…”I wish there was a cure and I would not be deaf blind tomorrow!” No one would bat an eye. that is totally acceptable. It is even applauded and encouraged as the strong, courageous narrative for a disabled person to have.  But if someone says, “I really am not happy with my working eyes. I want to have surgery so that my eyes are blind and disfigured.” That person would be at the very least be referred to a mental health assessment and would be very hard pressed to find any doctor who would agree to his chosen modifications. This is the dichotomy that disabled people fight. And, in some ways, I think it is similar to the backlash against transgendered people.It all has to do with social views of what is normal and what isn’t.

I am seeing two different narratives about Caitlyn Jenner: The first is acceptance and inspiration. She’s beautiful! She is brave! And I tend to agree with these. Anyone who fights the establishment to express their own identity is brave. It is not unlike those disabled people who eshew uncomfortable and sometimes quasi- functional cures, treatments and cosmetic prosthetics that able-bodied people rave about. They demand that they are comfortable in their own skin even when the world is not. Its a different side of the same coin. Caitlyn rejected the body that the world was comfortable with, but she was not. And of course she is beautiful, but you can’t deny, so was Bruce. As Jon Stewart said, “It’s really heartening to see that everyone is willing to not only accept Caitlyn Jenner as a woman, but to waste no time in treating her like a woman.” The unpacking of this beauty issue and all it implies is too big for this post, but the beauty I would like to think they are talking about is the obvious comfort, freedom and happiness she now expresses.

Caitlyn Jenner, from Vanity Fair

Caitlyn Jenner, from Vanity Fair

The other narrative, of course, is the transphobic “HE is sick! He needs help! He is an IT!” line. The bravery of trans folks along with folks that take pride in their own disabling and deforming conditions is to be true to themselves when they know others will treat them with violence, fear and hatred. It is a heavy price to pay. But as many who subscribe to the social model of disability would say, disability is a societal identification, not a physiological one. (i.e. why are 7 footers millionaire basketball stars while 4 footers are thrown within the realm of circus side shows and disability? Disability is largely a social construct. And the social marginalization that goes along with it is entirely constructed.)

I don’t want to say that transgendered folks are just sick people who don’t accept their bodies and their natural states. I don’t think that this is true. But I do understand how it rubs to hear rejoicing in the posit that transgendered people were born in the wrong body and they just needed to have (X,Y,Z) medical interventions to fix it. It gets really close to those who expose cures and treatments to make disabled people look less disabled. I was not born in the wrong body. I do not want to be “fixed.”

So, I propose that transgendered issues are also social issues, based largely on society’s steadfast need to define gender in a strict binary. Nothing is wrong with the person who is trangendered, except maybe their identities are on the more extreme ends of gender difference, and so it is much, much harder for them to comply with gender norms than most people. But the problem is gender norms themselves, not transgendered people. Males have penises, XY chromosomes, testosterone, and must be attracted to women. They must wear pants, dark colors, and like tools and cars and be awkward around babies and kittens. Females have vaginas and breasts, XX chromosomes, estrogen and like men. They should like pastels, wear dresses at least on formal occasions, be nurturing and like flowers and Oprah. But in truth, all those things are not absolute and slide upon a continuum. Of course, even for those of us who are still considered within the acceptable gender normative range, not one of us fits perfectly into these binary definitions of what it is to be “man” or “woman.” Society has a little wiggle room, but not much. My question is, if gender definitions were broken wide open and the binary ceased to exist, would there still be transgendered people?

I honestly don’t know the answer to this. And again, it is a weird irony compared to what the disabled face. If the disabled are all cured, they would be accepted by society, but many feel that there would be a loss of that experience and culture both on an individual level and on a societal one. Disabled people add value to society. But if the societal definition of disability vanished and people were just people who could do these things and not do these other things, that value would still be there.

So if there were no binary men and women, but some born with a penis could wear dresses and have long hair without any reproach, their value would still be there, but I suspect that would not be enough for many transgendered people. I get, on some level, that transgendered issues are not just about dressing as a person of the opposite sex and calling yourself a different name and using different pronouns.

I don’t know enough about the physiological aspects of it. Does a person who identifies as female but was born male NEED breasts? Or does a person who was born female but identify as male NEED a beard to grow? Do ciswomen NEED breast augmentation or laser hair removal or a facelift? Do men NEED Rogaine or muscle building powder? I do not know if I am comparing apples and oranges here. I hear some transgendered people saying that when they started taking hormonal drugs, they felt so much better. So there is much we don’t know about why some would go through so much difficult physical, emotional and sociological transformation in order to feel whole.

But when I look at myself and my own disabilities, I ask myself what I would be willing to change and what I would not be willing to change. I don’t ever think about getting good vision or hearing. I play around with the idea of Cochlear Implants, but there is no real rush. Maybe someday. But I also have kidney disease. And for whatever reason, kidney disease is not an identity to me like deafblindnerss is. Which is weird, because there is a “club” atmosphere for those who deal with the nomenclature of dialysis, kidney diets, and transplant medications. I’m sure to some it is an identity, but it might be more like the identity of cancer survivors sometimes take with them. It is the identity of staying alive and understanding your mortality. If someone offered me a cure for my kidney disease tomorrow, I would take it. Because, although I can recognize some that positive experiences have come out of my disease,  kidney disease seems more like an obstacle to me being myself. Deaf blindness seems like an integral part of me. Even if I did go for cochlear implants, it would still be a part of me. Cochlear implants would be something I would do to make it easier to get around in society, not something to make myself more whole or perfect.

I think it all comes down to the primary right of bodily autonomy. I don’t want society to demand I get cochlear implants just because it might make it easier for them if I do so. If I am going to make that concession, it will be mine to make. I don’t even want to be required to cure my kidney disease if that were possible. And with a gendered society or not, I do not want to tell someone else that they do or don’t need breasts or a penis or a beard or a dress. So, if the Caitlyn Jenners and Chaz Bonos of the world say that they feel better and free and more themselves by making these sometimes extreme body modifications, then so be it.

When I was very young, a person with a cognitive disability told me she wasn’t retarded, she was just slow. And I said (like kind of a dick), “but retarded MEANS slow. What difference does it make?” of course, in my naiveté, i did not realize the years of abuse, violence and baggage she had dealt with around the word retarded. “Retarded” which is not an evil word in and of itself, was made evil by the culture which also made it bad form to call someone an imbecile or a moron. The next word will get bogged down with abusive connotations as well, unfortunately. But it doesn’t matter. Even if society someday quite abusing this population, they get the right to name themselves. So do transgendered people, and so does everyone. They also get to decide what medical interventions to do with their bodies and what aesthetics they use, too.

What transgendered people are going to do, along with their LGBTQ and disabled brothers and sisters, is nothing less than change everything. They are going to blur the gender binary so far until it doesn’t exist.They are going to make it easier for anyone to express themselves and become their true best selves. Caitlyn Jenner’s life is not a typical experience perhaps. She is much more protected and privileged in her experience than, say, my aquintance Emily, who is still fighting insurance companies and trying to raise money for gender reassignment surgery. However, Caitlyn, Chaz, Emily, and all the people who take this brave step and support them are going to make us all better people. I can only think that some of that will rub off in a positive way over to disability social justice issues.

Yes, I can see you waving your hand in front of my face. Stop it.

My new (as of October) guide dog with my ID card which carries no legal status and is not allowed to be asked for by businesses or public accommodations.

My new (as of October) guide dog with my ID card which carries no legal status and is not allowed to be asked for by businesses or public accommodations.

As a vision and hearing impaired special ed kid, I was required to be turned over to adult rehabilitation in high school for “transition” services. When I was 16 years-old, my special education transition counselor brought a white cane to my house to give me my first orientation and mobility lesson. I was horrified. “I am not blind,” I said. I made her drive me to a different neighborhood to use the cane, so my high school peers would not see me and think that I was.

After high school, as part of my transition plan, I attended a 40 hour a week, months long program at a blindness adjustment and training center where I wore blindfold to learn the skills of blindness. I learned that only 10% of blind people see absolutely nothing, and the most blind people with canes were like me, they had some or a lot of usable vision. The question there was, are you safe while walking in your community and life 100% of the time without a cane and using alternative training techniques? If not, then use the cane. Use it with pride and don’t worry about what other people think. The vast majority of people in my class were partially sighted like me. We wore the blindfold throughout training so that we would know in our minds that no matter what we did, where we were, or how much sight we did or did not have, we could travel safely because we had those skills. At the end (last week or so) of training, we were allowed to transition to traveling with the cane without the blindfold so that we could get used to making decisions about when to use our sight and when to use the cane and alternatives to sight. It was actually harder for us to travel without the blindfolds at first. But after a bit, we got used to incorporating information we got from vision, vs. information we got from the cane and our own skills.

Orientation and Mobility for the Blind is 90% head game, 10% technique. You are told by everyone your whole life that you can’t go anywhere safely if you can’t see. And then you learn that its just not true. I’m glad I had to wear blindfolds because I never would have learned this otherwise. I always might have thought that I was using my vision. A blind person uses the cane itself as a means of tactile information gathering. It is mostly for the micro work of getting around the obstacles that are right in front of you. The macro work of traveling without sight is teaching yourself how to be a detective and learning how to hold a lot of information in your brain. You take the cues you know about your area and combine them with directions you have researched beforehand and cues that are going on in the immediate environment. Of course traveling with sight is more convenient and efficient, however, traveling without sight and using other methods and senses works just as well in the end. After my training, I was confident that I could travel anywhere I wanted to go and was no longer self conscious about using a white cane.

I remember the first day of really living on my own in college and having to run around town to run a bunch of errands. I did it all by myself! It was probably the moment that most likely mimics another milestone that I missed, getting my drivers license. I heard my friends talk about the freedom they had when they could finally drive themselves around. I felt that same way when I finally had enough travel skills to take the bus and walk anywhere I wanted to go. No more waiting for my mom to drive me everywhere or begging for rides. It was fantastic.

But there was a bewildering side-effect to my new-found freedom. I had to deal with how people treated me as they perceived me as blind with a white cane. People stared and jumped out of the way as I walked down the street. They talked in over-enunciated sentences as if I couldn’t understand them or talked to my companion about me as if I weren’t there. That was weird enough, but it was not the worst of it. I have usable vision. I sometimes use it. People sometimes notice that I use it. And it seems that someone with usable vision using a cane makes them very, very mad. People told me I was a fraud, a faker, and that I was just trying to take advantage and get attention. Or if they didn’t say anything, I got a feeling that they didn’t completely find me trustworthy and were wary of me. I felt like I landed somewhere in their uncanny valley of what I should be.

My vision and hearing loss, along with kidney disease, are caused by a relatively rare genetic disorder called Alport’s Syndrome. My hearing history is somewhat uneventful. I started Kindergarten with a mild hearing loss and no hearing aids. By middle school I started wearing hearing aids, and by the time I was in my twenties, my hearing loss was considered severe and I wore bilateral behind the ear aids (the cute ear canal ones being to wimpy for my loss) and using assisted listening devices in situations like college classes where the professor wears a microphone that pipes directly into my aids. My vision history is a bit more complex. I had severe myopia at birth. I also had several strabismus surgeries, cataract surgeries and retinal detachment surgeries throughout my life. I have had years where I could see fairly well with very thick glasses and I have had years where I could not read any print at all. People ask me all the time, “how much can you see?” and my mind literally goes like ??????? when I have to come up with a satisfying soundbite length answer. What I really want to say is, “I don’t know. How much can YOU see? Can you quantify it for me? And “everything: is not an answer, nor is 20/20. When you can answer that, I will be able to answer for mine.”

Here is why I cannot answer that question easily. I will try to describe for you as best I can how “much” I can see, and seriously, if you have an idea how I can cram this down to a sentence that will satisfy people, let me know. (I’ve tried, “I can see some, but not well. I’ll let you know when I need assistance, Thanks.” Doesn’t seem to cut it.)

  • My left eye has some light and color vision only during the day and when I think about using it. Most of the time I don’t. This means that my peripheral vision on my left side is non-existant. If I squint my right eye shut and concentrate really hard on my left eye, which kind of hurts my brain, I can see some things kind of clearly about six inches in front of me, except the middle is missing. Like, if I look at the palm of my hand, I can kind of make out the edges, but the middle is nonexistent. There is not a black spot, it just isn’t there.
  • I cannot remember the actual acuity of my right eye. I do know that I have read the same Snellen chart so many times throughout the years so I have it memorized. So, when I take a Snellen eye test, I have to really, focus my brain and ask myself, what are you actually SEEING vs. filling in with your brain/memory. It is hard to know sometimes because my brain is genius about filling in pictures where I don’t have all the visual data. So, without thinking too hard, I could probably get in the 20/200 category. However, when I concentrate really hard and ask myself to only say the letters that my eye actually sees and not what my brain wants to say, It goes down to about 20/800 or so (haven’t done it in years, though so ?)
  • I have limited peripheral vision in my right eye. I have probably about a 20-50% loss of field vision.
  • I have night blindness. This means that I see nothing at night. But that isn’t exactly true. I can see bright lights at night, but they don’t offset the darkness. They just look so bright to me that it blinds me even more.
  • But it isn’t only night blindness that is the problem. Any kind of change in lighting, like going from a sunny day to a building can make me unable to see anything for up to a half an hour or so. Also, walking though light and shadows (like a forest on a sunny day) can pretty much cancel out my vision.
  • Since I really only use my right eye, I have no depth perception. I really don’t understand what it means to “see” depth, so I don’t know what to tell you about this except that I can’t catch balls under any circumstances. PE as a child was pure hell. But for most things, my brain compensates for my lack of depth perception by processing other clues like lighting, size, distance away, etc.
  • I have floaters. These are just probably scar tissue from past surgeries. They float around and I ignore them, but they get in the way sometimes.
  • I have no lenses. Lenses, which allow your eye to focus on near and far things, were removed during surgeries. I have too much scar tissue to get donor implants. contact lenses are not practical because they will only focus at one distance, so I could either see far and not near or near and not far. I prefer to just stick with the focus I have.
  • Which is about 12-18 inches in front of me. So I can see some print if I am close enough. This freaks people out.
  • I also have some other mechanical problems which sometimes affect my vision. My tear ducts do not produce enough tears, probably due to so many surgeries, so dust, pollen, or getting something in my eye can take me out for a day.

So, I can see some stuff. I don’t pretend I can’t. I use my vision when it comes in handy. More and more these days, it is easier for me to use Braille and VoiceOver on my computer. I can see some stuff when I walk down the street. And, my brain is expert at making sense of small bits of data. For example, once I was looking for a particular restaurant with some friends. They couldn’t find it, but I had an idea of where it was and I saw a light that had the rough shape of the name of the restaurant and was in the colors of the restaurant. So I pointed and said, it is over there! And then, of course, I get the whole thing, “you can see, you are a faker” jest. Well, did I see the sign like they see the sign? No, but my brain was able to put a small amount to hints together and I went with it because I mostly trust my brain to do that.

Being blind takes skill. It is skills that sighted people are not going to develop. When a sighted/hearing person tells me how great I am doing and how “I don’t even seem deaf/blind” they have no idea how much my brain is processing and putting together and how hard I have to work for it. I sometimes wonder what would happen if I just walked down the street and snapped my fingers and then everyone on the street could suddenly see and hear like me. Their radius of sensory information has just been reduced to 2 to 3 feet. I continue to walk down the street while they fall to the ground huddling in fear and helplessness because they are too afraid to move forward an inch. Their brain will adapt and they would learn the skills to be just like me eventually, it isn’t anything special that I am doing. It is just a different skill set. The problem is, because I “do so well,” I get the faker label and no respect for what skills and work I am doing to “do so well.” I know they mean it as a compliment when they say it, but for me it sounds like a slam of who I am. Doing so well sounds like doing it non disabled. And I have no problem with who I am. I am not trying to be non disabled.

So, I have dealt with this faker label with my cane. And when I was young, it was puzzling to me what I should do about it. In certain circumstances, I totally could pass as sighted. My mother would urge me not to take my cane when I was with her because she did not want to deal with the attention and baggage that goes along with it. So, I could do that. It was easier when I was younger. But I could not do it all the time. And I risked not only my own personal safety, but looking like a drunk or crazy damned fool when I fell off the sidewalk on occasion. To not use a cane or a dog to run to my mailbox is not that big of deal, to not use a cane all day was constant anxiety. Every step is taken with some trepidation and although I might have looked fairly normal walking down a familiar street, a change in lighting or an unexpected bit of construction or obstacle could stop me in my tracks. A day without a cane was like a hundred little episodes of thickly veiled fear mixed with relief that I got through those few tentative steps…but always wondering where the next bit of trepidation would be. When I think of those times of trying to “pass” I remember just an overwhelming sense of anxiety that I had to constantly hide.

I tried not ever using my vision for a time. Basically, instead of passing for totally signed, I tried passing for totally blind. But, besides that this is dumb and could have gotten me into even more trouble, even if I didn’t use my vision, people perceived me as using my vision. If my head moved or eyes moved toward a sound, they thought I was using vision. Short of plucking my eyeballs out, this wasn’t going to work, either. For awhile I tried this thing where I was going to use my cane “perfectly honestly” and only bring it out when I needed it. But that put people right over the edge. I would spend time with people during the day without it, then as it got dark I would casually mention that it was getting a bit harder for me to see and I would unfold it from my bag. People went bonkers and would literally slowly back away and leave me all by myself, if not openly mock me.

In my early 20s, I decided to get a guide dog. I did this because my hearing was getting worse and because other partially sighted people told me it eases the faker burden that the cane carries. This was in the early 90s. And so I went through the year long vetting process and the month long training and got my first dog from The Guide Dog Foundation for the Blind in New York. It was great! It solved almost everything.

Besides that dogs are cuddly and fun and great companions, guide dogs are essentially a mobility tool. You still have to have mad orientation skills and your brain still has to be on top of everything. Guide Dogs help you in the micro travel, like a cane does. Only better. Guide dogs get you around obstacles with grace and ease and help with keeping a straight line. I tell people that a cane is like pencil and paper and a guide dog is like a word processor. You still have to know how to read, write and spell, but it is a whole lot easier with a word processor.

Because I am deaf blind (by legal definition, I am deaf blind. Deaf blindness, like blindness, affects most people only partially) having a dog helped tremendously to open up my radius. Rather than 2-3 feet, she gave me subtle cues of up to a block away. I could tell if a person was approaching me or behind me, and even if I knew them or not.

But more than that, my dog became a social bridge and a buffer to the whole faker label. People loved to come up to me and talk about dog stuff. It got old, but at least it was an in to having conversations with people and putting people at ease. Further, back then, the dog seemed to give some legitimacy somehow to my actually being a blind person and not a faker. Back then, it seemed like guide dogs were respected and revered and people thought that you must really need one for legitimate reasons if you were able to get one. And I do think that they thought that some of my “doing so well” was the dog “doing so well” for me, although that probably wasn’t totally the case. In any case, the faker label all but disappeared. Those years of my first guide dog were the nicest I was ever treated by the public.

The "glory days" of guide dog use. In the 90s, people seemed thrilled to meet us and learn about guide dogs and blindness or otherwise connect.

The “glory days” of guide dog use. In the 90s, people seemed thrilled to meet us and learn about guide dogs and blindness or otherwise connect.

I was pregnant when she died at 13 years old. And because of my pregnancy and getting used to motherhood with twins, I did not go back right away to get a dog. I half caned and half went along with my kids in a stroller, at times using the stroller as a mobility device. During this several year gap that I took between dogs, I got the old faker label back again sometimes.  Oh well.

My husband, who is totally blind, got his second dog and I used his dog a few times which gave me dog fever again. Also, my husband saw the different ways he was treated as an obviously totally blind person (his eyes are disfigured) and the way I was treated as a partial and it made him mad. He suggested that my getting a guide dog again might help with that. So back I went to New York for my new dog. She is wonderful. She helps with all the things that my first did. The first weekend she came home I took my kids to a theater. And as we shuffled out with the crowd, we were stopping and going and in my mind we were further from the top of a steep flight of steps than we were.  She stopped at the steps and refused to go until she saw me realize that it was a flight of steps. She saved me from a very embarrassing and possibly injurious tumble!  I deal with things all day long like this, but people just notice that I might be able to read a sign if I walk right up to it. My vision and hearing are worse now than they were with my first dog, and she has opened up that small radius again. She makes my life easier in so many ways.

Except one. My faker label is stronger than it ever was.

Things have changed a lot since my experience with my first dog. The use of service dogs has exploded. They are much more common to see and many have questionable training and are not so well behaved. While it is great that so many people can take advantage of the vast amount of services dogs can do for the disabled, it has caused a deflation in the reverence that people seem to feel for the dogs. There are no national laws or standards on dog training or designation, and so anyone can say they have a service dog now. Many of these “self-trained” service dogs are wonderfully behaved and perform needed services for their handlers, and then many are not. And then, some non disabled people try to pass off their dog as a service dog, as there is no real way to enforce service dog rules. Under the ADA, service dogs are allowed in public accommodations. The manager is legally able to ask two questions: 1) Is that a service dog? and 2) What services does he perform for you? If you answer in the affirmative and list off some legitimate sounding services, they have to let you on your way. You still have a responsibility to keep your dog under control.

With my first dog, I may have had an issue with her in a public place perhaps once or twice a year. Now, I have to go through the rigamarole almost daily. It is pretty much standard now that everywhere I go I am asked those two questions. It isn’t terrible to have to answer them in and off themselves, but then what happens when you have some usable vision is quite problematic.

My husband also gets asked about his dog as well, but after he answers the two questions, he is sent merrily on his way. With me, its different. Since it is somewhat obvious that I have some vision and my hearing aids may be covered by my hair, I get met with hassling and disbelief. It goes something like this:

I walk into the store:

Clerk: That dog can’t be in here.

Me: She is a guide dog?

Clerk: She is a service dog? (Incredulously)

Me: Yes

Clerk: What kind? What does she do for you?

Me: She is a guide dog. I can’t see well and she helps me to avoid obstacles and navigate steps.

Clerk: You can’t see? You can’t see me?

Me: I can see some, but not well. I am also hearing impaired so she is a help there, too.

Clerk: (Waves hands in front of my face) Nooo. You can see. You can see my hands. You are tricking me. You see me. Where did you get that harness? It doesn’t have a sign.

Me: My harness came from the school she was trained at Guide Dog Foundation in New York, you can see their name on the strap across her back.

Clerk: Are these your kids? If you can see your kids you don’t need a dog. That dog isn’t a service dog…

I usually end the discussion and go about my business as if I have no idea that I am being stared at and whispered about.  I have not been thrown out of any place yet, but it is a constant hassle. A more subtle version of this is when they don’t start waving their hand in front of my face but might start testing me the whole time by pointing at things to see if I can see what they are talking about or once someone kept moving my credit card around instead of handing it back to me to see if I would notice.

Other times, I just get sort of a “yeah, right” treatment. People aren’t necessarily outright mean, but they don’t engage or engage minimally because it seems as if they are too confused or unsure of how to deal with me. I also get the “you don’t look blind” business a lot.

I don't even care what they say. I love this dog and I'm keeping her! She is such a good guide and deserves some respect, damn it!

I don’t even care what they say. I love this dog and I’m keeping her! She is such a good guide and deserves some respect, damn it!

It is disappointing, because I feel like no matter what I do, I can’t put the public at ease and it is isolating. If I don’t use a cane, I risk my own safety and I look like a trippy, drunken fool half the time. If I use a cane, I get called a faker or distrusted. If I use a dog, it is now almost worse, although accommodation-wise, a guide dog is what helps me the most to work within my disabilities. The only thing I know to do is to try to educate people and move on. Thankfully, there are people who do ask questions, learn from my answers and develop an understanding about my situation. It doesn’t seem like that hard of a concept that some people don’t see well enough to necessitate a mobility tool even if they do use their vision sometimes.

Research has shown that those with so-called partial disabilities (ie. those who use wheelchairs but can walk some or those who use dogs and can see some, etc.) face verbal and physical harassment/abuse and discrimination at rates even higher than the already high rates of the more “traditionally” disabled. I think part of this comes from strict definitions used by government programs that define disability in very black and white terms, and also a backlash against people who use services or accommodations as “not deserving” them if they are not the most severely disabled. It is akin to the mythical “welfare queen” that supposedly buys lobster and filet mignon with foodstamps. These stereotypes have proven again and again to be almost universally untrue, but still these attitudes of “catching someone getting what they don’t deserve” persist. In truth, the vast majority of people who partake in these services are doing everything they can to thrive and be productive citizens by using the very accommodations they are being accused of taking advantage of.

I also think that some regulation is going to have to come down about service dogs. This is another case where a few who are not playing by the rules are ruining it for the many who are. I think service dog teams should have to be trained by an accredited trainer or training school and/or take a test on basic decorum plus whatever specific skills the dog performs to assist the disabled user. Then, some kind of hard-to-counterfit badge or signage should be issued upon passing the test and should be carried or worn by the dog or handler. Outreach and education will be needed about this regulation and badge and rules about hassling users should carry some consequences. Counterfitters who have fake service dogs should face severe penalties and fines.

There is push back from this even by service dog users because it is a hassle to get your team certified and who will pay for it and implement it. So I realize that this regulation has a ways to go before the kinks can be worked out. Until then, it would be really nice if people with fake or poorly trained service dogs could think about the rest of us and the amount of hassle they are causing us. And it would be nice if the public could also realize that not every blind person sees nothing, deaf person hears nothing and that not all disabled people use wheelchairs. I don’t think I should have to prove to every store clerk and McDonald’s employee that I can’t sense their hand waving two inches from my face in order to go about my business in peace.

Purple Feather Blind Beggar Viral Video…I just can’t even-

So, here is the focus of today’s discussion, a video by a UK advertising firm Purple Feather. It has been going around on Facebook for a few years now. Depending on what version reaches you, it can have tens of thousands of positive comments. Comments that talk about how inspirational and beautiful and meaningful it is. It’s not even original in its advertising for Purple Feather. It is based of a story told in the 60’s by original “Mad Man” and advertising legend, David Ogilvy. For those who need it, I offer this brief description:

Sentimental piano music plays throughout. An older gentleman sits on a piece of cardboard in front of some cement steps in a busy city center plaza. He has a tin cup next to him and a cardboard sign that says “I’m Blind, Please Help.” A few people walk by and offer him a absentmindedly tossed coin or two, but most walk on by paying him no mind. Other people are shown enjoying their day in conversation or at coffee shops. The blind man pats his hands around in front of him to find the coin or two that has been thrown his way. A young woman dressed a black coat and wearing sunglasses walks by. She backtracks and stoops down in front of the man. He feels her shoes. She takes a sharpie and turns his sign over to write on the back side, then replaces it next to him and walks off. We don’t see what the sign says. But now, many more people throw many more coins at him. He can hardly pick them up fast enough. Later, the woman comes back and stoops before him again. Again he feels her shoes. He recognizes her and asks her what she wrote on the sign. She says she said the same thing but in a different way. Then patting him on the shoulder, she walks off. Now the cardboard sign is shown. It says, “It’s a beautiful day and I can’t see it.” The video fades to purple with the text, “Change your words. Change your world” and then the PurpleFeather logo and URL are given.

I pretty much ignored it the first time it went around. But recently it reared its ugly head again. It infiltrated my family. My father’s wife posted it. Now, I have long since stopped having high expectations for my family–at least the older generation–understanding disability civil rights issues despite my upwards of 25 years of trying to influence them. My father is incapable of giving myself or my husband any sort of compliment without adding “for a blind person” at the end of it. “You cut the grass pretty well for a blind person.” “This dinner is pretty good, considering you can’t see.” My husband and I have raised 5 children, traveled internationally independently, gotten degrees, held jobs, run our own business, etc. But we still are only doing ok in my dad’s low socially influenced standards of how blind people live. I told my husband the last time we were laughing about all the “for a blind person” backhanded compliments that he could invent and perform a microsurgery that cures inoperable brain cancer and my dad would still say that this was pretty good “for a blind person.” We don’t worry about it. (ETA: My family member did remove the post after I protested.)

But there was something different about representatives of my family posting stuff like this on Facebook. It advertises publicly their prejudice and ignorance, which is bad enough. But for those friends/family who we share in common, it somehow implies that I endorse or condone this type of “inspiration porn.” That if the blind person’s family is putting this up, it must be ok. And it is not ok. Let me count the ways.


Panhandling and its frequent accomplice, homelessness are complex issues, and in the video, we are given no context as to why the man is panhandling except that he is using his blindness to solicit money. Although a century ago, it was quite common for the disabled to have no other options than panhandling in the streets (the term “handicap” came from the expression “cap in hand” as many disabled used to use their caps instead of a tin cup.) After decades of disability self-advocacy groups fighting for their civil rights through legislating things like the ADA and developing and promoting technologies that allow the disabled to work, we now know (or should know) that disability itself, most especially blindness, does not mean that a person cannot work. There are blind lawyers, doctors, nurses, teachers, artists, scientists, etc. Pretty much anything you can think of, somewhere, a blind person is doing it. However, blind people still fight upwards of a 70% unemployment rate and a significantly higher level of poverty than the general population. If we know that blind people can do almost every job and compete equally in the workplace, how can this be so? Because the problem is no longer lack of ability or aptitude, it is lack of opportunity. Many blind people lack quality education and skills training that teach them the alternative skills of blindness. They are denied access to colleges and universities and if they do get in, are often denied reasonable accommodations to do their classwork. They suffer discrimination in the workforce when people believe they are not capable.

We don’t know why this man is panhandling. He could have just lost his job. He could suffer from addiction or mental illness. He could be a greedy, lazy sonofabitch who just wants to take advantage of people’s misconceptions about what blind people can do. It could be tangentially related to blindness. He could have been denied quality training and opportunities to work in the community. But I do know this. He does not have to panhandle because he is blind in and of itself. He is using blindness to gain sympathy because he knows that this is probably the most acceptable asset he has in the panhandling business. I make no judgements against panhandlers, disabled or not. It is a rough world out there and we all gotta do what we gotta do to survive. So (if he were a real person) I don’t judge him for panhandling, I judge the advertising firm for using his blindness as inspiration porn.

And talk about old, used, cliche’d messages. Talk about “change your words/change the world.” Purplefeather showed no innovation in advertising here, they showed how outdated and uninspired they are. They used another person’s story from half a century ago with an old cliche. If they really wanted to “change the world” for this blind person, they could have maybe come up with something that would have had the public standing up for him in ways that really mattered. What if someone would have offered him work? Or educational opportunities? Or at the very least, asked if he was ok and if he was able to get to the nearest shelter or food kitchen. What if they would have shown competent blind people advocating and legislating for change in discrimination laws and then showed how these laws changed his life? I am sure there are a lot of creative slogans that they could have come up with there that would show their advertising prowess and “changed the world.” Would you really hire this ad firm based on this cliche’d lack of originality?


If the panhandling while blind meme wasn’t bad enough, the video goes on to surrender to every single stereotype about the passive blind person who needs a sighted person to save the day. We are supposed to admire this hero, this woman who changed this man’s world. But really, she was rude and disrespectful. She comes up to him, says nothing, changes his sign without telling him what she wrote on it, and walks off. He apparently was rendered mute here. He cannot speak up and ask her who she is and what the hell she is doing, he is left to inappropriately FEEL HER FEET to gain information about what is happening around him. She could have been taking his money, or writing “Please Fuck Me Over” on his sign. He doesn’t know, and she doesn’t tell him. Believe it or not, us blind people are capable of obtaining information we can’t see. We have mouths and we can ask. We don’t need to grapple, hands outstretched pathetically, at people’s faces or shoes in silence. Every single person was rude to that man in the video with the possible exception of those that walked right by. I have occasionally been in a position to give money to panhandlers, and I would NEVER throw it at them as if I was throwing table scraps down to a dirty, feral cat. I would always say at least some sort of greeting and either hand it to them or put it in their container provided. What makes the fact that MORE people throw money at him after she changes the sign any more compassionate? Of course the grappling that he has to do to find the coins around him is very dignified, too.

The Message

Whatever we think about the man using his “I’m blind, please help.” message, it is implied that he wrote it. The message is one of action. Please help. It is his own words, in first-person. It is polite, but direct. If he truly does need help, this is exactly the correct way to ask for it. But apparently, the message is that this call for help was not good enough for the passers-by. Pehaps they, too, are tired of the blind beggar cliche. This video takes place, presumably, in the UK. The UK has a very complicated relationship with its disabled citizens. They suffer an extremely high amount of harassment and ridicule, much more, it seems, than in the US. It is common to have to listen to hollered insults, and there have even been reports of blind people having their canes nabbed as a prank. Referring to his blindness might have gotten him in trouble there, rather than helped him gain sympathy. But ‘Please Help” at least attempts to solicit the needed action.

So our heroine blows in with her variation of the same line, what difference would it really make? First of all, it plays on exactly the same sympathy as the “I’m blind” sign, although perhaps with somewhat more poetic wording. But the wording is also passive, and passivity further enforces the stereotype of the poor, helpless man in need of saving. But, I’m being silly. The video has nothing to do with helping the man in any way. It is pure inspiration porn. It is meant to illicit a good feeling in the able-bodied person. To inspire them to think about how lucky they are and how grateful they should be in comparison to the poor, helpless blind man. I mean, he can’t see the beautiful day!!! In no way can blind people enjoy a beautiful day in any other way besides seeing it. And as such, their lives have no quality and meaning, right? Feeling the warm sun on your face or smelling the fresh cut grass or listing to happy children playing or being able to wear summer clothing and feel the light wind on your body mean nothing in comparison to seeing a bit of blue sky among a bunch of cement buildings. It does not matter to the heroine or to anyone what this man really feels about the beautiful day or his life within it. He can’t see it and we have decided for him that inherently that lowers his quality of life. It makes us feel such warm, fuzzy feelings of gratitude for our own vision and pity for him that we throw him a coin or two for doing his job.

What was his job? It’s the same job as society expects of all disabled people. We are supposed to perform, in a 1-2 punch delivered exactly the same way with real or imagined sentimental piano music playing in the background. Step one: make people feel pity for us due entirely to their perception of how our disability affects our lives. It does not matter what the reality of our disability is for us, they need the pity narrative because it is essential for step 2. Step two: inspire them by “overcoming” our disability and “rising above it” as if it is some huge obstacle we need to climb around or over rather than an integral part, along with a myriad of other complexities, of who we are. If we cannot rise above it, like perhaps the blind beggar could not, then we need to use it to show people how grateful they should be that they are not us. And we need to do that gratefully, as to let them know that we appreciate their goodness is throwing us their scraps to somehow allow us to subsist even though our lives aren’t worth living. We are your inspiration porn. Here solely as fodder for you to make yourselves feel better. “It’s a beautiful day and I can’t see it!” Most blind people would say, “yeah, and? Get on with it.” But to do so would be us not doing what society expects. We are here to make you feel better about yourselves because at least you aren’t us.

Would it have worked? If you had two similar blind people who were begging on opposite sides of a block; one with the first sign and one with the second; who would get more money at the end of the day? Who knows? And that isn’t even the question an advertising firm who promises to use words to change the world should be asking. You still have two blind beggars on the street. When there are so few examples of blind people in the media, and those that are seen are often portrayed negatively in piteous and incapable ways, what could a creative advertising company do to change the world? They have 60 seconds to send a message about the power of words and their originality in creating them for us. They could play on an old, tired, stereotypical meme that is half a century old, or they could have really come up with something good. What about a scenario where they were advertising for a self-advocacy group like the National Federation of the Blind? What if they showed a highly capable blind person who was struggling to get a job due to discrimination and they came up with a slogan to break down these barriers? Wouldn’t this kind of campaign be a bigger example of changing the world? They chose to exploit an already marginalized group in ways that promote stereotype and discrimination. And what did they accomplish? Well, maybe they have a way that a blind dude can make $15.35 a day rather than $7.21 a day. But in doing so, they have done more to cement the oppressive ablism that likely put that man on the street to begin with. They could have used some amount of creativity and imagination, and ACTUALLY changed the world for the better.