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.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.