Crip Chronicles: Volume 1

I have a lot to say in this one so brace yourselves. I'm really hurt and stressed right now cause I've experienced some crazy shit this week that I just got to get off of my chest. If you are not ready for some blunt honesty, then you are reading the wrong blog and I suggest you log out now:P
Ok, you read my disclaimer so here we go...
This last week has been crazy. Now, being a person with a physical disability, I encounter crazy shit all the time. What I mean by crazy is that I encounter a lot of discrimination and/or ignorance from people who just don't understand or have rarely encountered a person with a disability in whatever situation I am confronting them in at the time. This wouldn't be a big deal if I only encountered people and situations like this once or twice a year. The problem is, that it is a regular, often everyday occurrence, and it can be extremely stressful. I think most things I am able to shrug off because I am used to it. So, for instance, if I am about to cross the street and some stranger randomly says "What happened to you?" I can just say "Nothing" and continue about my business. Once, when a lady came up to me on the street professing how much Jesus loves me and demanding me to just "Get out of that chair!" because God will heal me instantly of course. Well, it made me laugh, was quite strange, but didn't stress me out. It just gave me a good story to tell my friend. Or the time when I was rolling in my chair with one of my best friends and a stranger walks by and says "God, if I have to see another wheelchair today!", I think that's another unbelievable and funny situation, but it's not going to stress me out. At that moment me and my friend just stared at each other like "Did he just say...what I think he said?" What I want to know is, where the heck does this guy live where he encounters a shit load of people in wheelchairs everyday? And more importantly, how can I get there? Because, pretty much everywhere I go, I am the only one. And, if I am not the only one, then I am the only black one. But, I am usually always the only something. The last time I was in a diverse community of people with disabilities and able bodied people who didn't bat an eye about it, was when I was 17 years old, attending a public school for people with Physical disabilities in Philadelphia called Widener. The type of school that a lot of disabled activist want to have shut down because they say its segregated. But it's also the last place I felt comfortable, the last place I felt like I belonged. It's funny how a place that is on one hand a discriminatory institution, because it was built to effectively isolate and restrict able-bodied peoples encounters with the other, is also the most discrimination free space I ever existed in. Mostly because it was completely accessible, and everyone who attended and worked there was conscious about disability, so I never had to confront ignorance there like I do now in the more "integrated world". Special Ed folks would call this mainstreaming. But, again, I digress. Back to my story.
So on Friday I wanted to have a productive day. Lately I have been trying to make appointments and take better care of myself. One of the appointments I went in person to make while running errands was the GYN (Gynecologist). I had visited this Dr. once before but she never examined me. She only evaluated me by taking my history, and said that when I return for an appointment in the future, I should let the office ahead of time that I am a wheelchair user so that the staff will be prepared to assist me with getting on the table and parting my legs. I thought that this was a reasonable request so I agreed that when I made my future appointment for an exam, that I will inform the receptionist of this need. So, imagine my surprise when I stopped by the office last week to make my appointment and the receptionist at the front desk and I had the following exchange:
Receptionist: Ok, I can make an appointment for you but you are going to have to bring someone with you to help.
Me: Someone with me to help me do what?
Receptionist: Well...you're....you're going to need help getting on the table, and we don't do that.
Me: Oh no, I don't need help on the table. I can get on the table myself. I just need someone to help me hold my legs open.
Receptionist: Yea, well we don't do that, so you are going to need someone to bring someone to help you.
Me: But I talk to the Dr. before and she said all I had to do is let you know ahead of time and someone here will assist me.
Receptionist: No, no one here does that. You will have to bring someone with you.
Me: But, I don't have anyone. I mean, my family is in Philadelphia and I"m not married. I don't have a husband. I mean, I don't want to just ask anybody to help me at the GYN. Would you feel comfortable asking one of your friends to help you at the GYN?
Receptionist: I'm sorry but, if you don't bring someone, we can't see you.
Me: But...isn't that discrimination? What is the point of having a ramp outside your office, if you are going to refuse service to me once I come in? I mean, I use a wheelchair but, I still have a vagina! (Yes, I said that). How would you feel? Do you trust one of your friends to just go with you to the GYN? I'm sorry, but I have never heard of this. I went to the GYN in Philly, I have been to many Drs. offices. No one has ever suggested I needed to bring someone just to hold my legs open. I mean, I can get on the table myself (at this point I am a little panicky and kinda begging to be seen.) Can't someone just hold my legs?
Receptionist: So...you can get out of your wheelchair? You can walk?
Me: Yes, I can walk. I can get out of the chair myself. I just can't hold my legs. I just need someone to hold them.
Receptionist: Hold on while I talk to the Dr. (Receptionist leaves and then returns). Ok, I spoke to the Dr. and she said we will try it your way when you come in, but if it doesn't work you will have to bring somebody with you.
Me: (Stunned, staring into space). Ok, fine. (I took my appointment card, I asked the receptionist to hold the front door for me, which was a difficult request to make after this exchange. She already is looking at me like I am a uppity cripple bitch. After she held the door, I thanked her left.)
In hind sight, maybe I should of asked to speak to the Dr. herself. I saw her going back and forth from the receptionist area, and I know that they had spoke and she could hear at least part of our conversation. There was also another receptionist or assistant of some sort in the office nodding and confirming what the other receptionist was telling me. So, it appeared that everyone was in agreement about me needing to bring an assistant. So, in case you can't already tell, let me explain what went wrong in this conversation as I see it.
1. The receptionist made a number a problematic assumptions about my capabilities and my needs, without ever asking me. She assumed I couldn't walk and needed help getting on the table. The best way to go about this I think is to say something like "Ms. Miles, I noticed you use a chair. Will you be needing assistance transferring to the table? If so, we suggest that you bring someone in to help you. If not, we not be able to provide services for you here but there are other places that can. (I know, I expect too much of people, but in my world, if she had said it like this, I might not of panicked so much.
2. Even so, isn't it still problematic that this office can't accommodate wheelchair users? Don't they already assist pregnant women on and off the table? Can't they at the very least hold my legs open? Damn, what am I paying these people for? And why don't they have at least one table that goes up and down automatically? If more places had this device more doctors offices would be accessible to people with disabilities.
3. So here we go with the issue of reasonable accommodation vs. "Special" treatment for people with disabilities. On the one hand, I understand that it may be a lot from some offices to lift patients with disabilities if they don't have sufficient equipment and staff. On the other hand I did not request nor do I require such accommodations. All I asked for is for someone to hold my legs open. I guess that's too much to ask. I don't think this request is special or unreasonable. All I want go to the Doctors and go home like everyone else. But, I am not like everyone else. Why does everything with having a disability have to be such a damn production?
4. It's so amazing because I have read about how women with physical disabilities face disparities in access to health resources like the GYN, but when it happens to you it's like, damn. It felt like a movie. Like is this really happening? Are you really refusing to see me? Crazy. And it's a major problem. Imagine how many women with disabilities, who are less likely to be married or have children, are turned away from Drs all over the country because they are unwilling to accommodate or at the very least suggest another office that is. Worst than that, so many women with disabilities have even higher risk for GYN related disorders for multiple reasons, yet have a harder time getting these problems treated. This is bullshit! And it makes me so angry! How can doctors, the medical profession, discriminate against people with disabilities? Isn't that ass backwards? But, the reality, it makes perfect since. In world made with able bodied people in mind, even places for the sick or impaired, assume a certain "normal" degree of functioning. These assumptions marginalize and exclude people with disabilities in medical services just like they do everywhere else. And I'm always so shocked by it. I feel like, really? Wait...really? Is this really happening to me? But, alas, it is. And this is just the latest story y'all. I have countless others, past and present. But, I had to write this one out so that I can function and so I seek support, wisdom and just a shoulder to cry on, a ear to vent to about situations like these, because they are so confusing, stressful and hard to manage, especially when you are managing them alone.
Ok, one last story that is stressing me out. So today, I was talking to the librarian who manages the disability technology lab at the University of Maryland. Lots of Universities have these labs in their libraries. They provide services for students with disabilities by locating books and articles for us, providing Braille text for those who need them and other technologies, etc. etc. So, today I tried to print something in the lab and none of the printers would work. I told the manager about the problem and he tried to fix it but could not. He said the problem was that too many students abuse the printing privileges in the lab, but all of that is going to change next year when the lab starts charging for printing. He said that he did research and could not find any good reason why students with disabilities shouldn't pay for printing in this lab just like all the other students in the library. Now, keep in mind I am already fragile and on edge from this recent event, as well as others that I don't have the strength to mention in this note. (One of them has to do with the shoveling issue on campus and how it was terrible for everyone I know, but their was no priority or emphasis given to ramps and curb cuts and other major entrances for people with disabilities on campus after the school opened. But, I digress.) So, one student with a disability in the lab at that time said "I can, cost. People with disabilities tend to have higher cost of living, so charging them could increase their difficulty" But the manager argued that this was not. His job or concern and that was not a ADA accommodation type need. He also said that lots of other students would like to have free printing and they don't get that advantage. I think they would be upset if they knew how much money is being wasted on paper in this lab. And students with disabilities don't have greater cost than students without disabilities. I'm fine with providing accommodations to a student if she demonstrates the need, but she has to demonstrate the need, or sue the University. Ok, I don't know what happened to me after he made these statements but something in me just snapped. I responded "Able bodied students on this campus have access to everything at this University without thought. They have all types of advantages over me and other people with disabilities. So, you are going to have to excuse me if I don't feel bad for some free paper the University provides me every once in a while. I don't feel bad about it at all. Because graduate housing at Maryland is still not wheelchair accessible. Because of that, I have to pay considerably more (at least 200 more) a month to live in undergrad housing on campus. And as far as providing evidence of support for an accommodation, that paper work is more to protect the university then the students needs. They can't wait to refuse our request if we don't "prove" that we have a disability which makes us eligible for whatever. Once, I argued that I needed a bath tube in my residents, and the University told me that the ADA does not require that bathrooms have a bathtub, but a shower, so they refused me. Funny, the institution can always quote the ADA when the don't have to do something. Otherwise, they don't know what it is. I told him that all reasonable accommodation is, is how can we pacify the cripples, without inconveniencing the masses basically. I told him that there is so much on this campus that disabled people don't have access too, and until the university addresses those problems, give me my free paper! Oooh girl, I was hot! But still, this conversation raises the issue of reasonable accommodations vs special treatment. This is a hard call to make. Especially since, on the one hand, I think the manager is right. If it's an issue of equality, there is no reason why disabled students shouldn't pay for their own printer paper. If their is no medical reason justifying why this person is not capable of purchasing paper, then technically there appears to be no ADA justification for the accommodation, and then it would go on to be classified as "special treatment". On the other hand, what about equity, which doesn't assume sameness of treatment but rather sameness of outcome? If people with disabilities are treated as a minority group that has been historically excluded and that is likely to experience prejudice because of it, couldn't this free paper be like affirmative action, or reparations even? I know it might seem like a stretch, and it is just paper. But, it represents more than that to me. It's the principle of it. I know it may not be right, and God help me get through this, but I had major problems with this able bodied white man telling me that I have an advantage over other students because I print some paper once in a while? How many other offices are on campus, where staff and students print paper freely? Are they oppressing others too, or just our disability lab? And I know it's wrong, but I just feel like, this is the one damn privilege I had on this campus, and now they wanna take that too. It's so hard to discern as an individual with a disability, the difference between reasonable accommodations and special treatment. Mostly because, you are rarely ever treat like everyone else. We rarely ever get what we really want, which is equity. People either treat me "special", give me "priority", or tell me to wait my turn, give me inferior service or no service at all. Equity is a rare occurrence, and when I do receive it, even then I am often treated like I am being awarded with charity and should be especially grateful for all the hard work others did to help me get to x location, rather than just getting the treatment and respect I deserve, without pity or annoyance from others. Sometimes I want to say to my paratransit driver, "oh, I'm sorry, did I ruin your day by making you pick me up? Or the bus driver, "Gees, I'm so sorry you had to actually get out of your seat, bring the lift down and lock me in. What an inconvenience.' That's if they ever even stop at all. I just want to yell, NOooo!!! Stop!!! Stop hurting me. Your hurting me. It hurts. This hurts! I am a human being! See me. Really see me. It's one thing to stare at some body, it's another thing to see them for who they are. It's crazy because, out of all the people who stare at me, none of them really see me. And this is what I desire the most. I'm tired, tired of this shit. But it is so hard. It doesn't get easier with age, it just gets harder. When I was a kid, they loved cripples. Oh, isn't she so cute, with her little crutches, and her tiny braces. Smile for the camera. Smile for March of Dimes, Smile for Variety Club, Smile for Easter Seals, smile, smile, smile. Well, where are those organizations now? How many adults with disabilities do they make smile? And many of those children have genuine smiles on their faces? One's that they won't regret later when they realize, it was all a game. They were just used to help others feel less guilty about the privileges they have and they way they will likely treat you when they see you on the street, or arrive in their office asking for a job. It's funny how some people would rather have us dependent on their charity, that help us get a job. Oh, it makes me wanna holler!!! As the song goes. But, in the end, I have to figure out how to manage this stuff. The stress of it I mean. The stress of managing disability and disability stigma, discrimination, accommodations, etc. No body teaches you that, I mean, no body. It's something I have learned and I am continuing to learn the hard way. Through trials and tribulations, prayers and petitions, and lots of mistakes. But, I feel now, more than ever, that I am so angry, and tired. I just don't want this anymore. It's not that I am ashamed of being disabled, but with all the shit that comes with it...they can have it. It's too much. And what makes it even harder for me to bare, is that out of most of the people I know that is like me, that is, who has a physical disability since child hood, and is also a person of color, for the most part I am doing the best. Now that is scary. I am one of the few that is living independently, has two degrees and moving on to a third, and a has a job. This is a major accomplishment for anyone in this economy, but for someone with a disability. Man, it's major. You have no idea. And yet, I feel it. I feel it everyday. I notice the people who aren't here, who I grew up with who could of been here, where I am, but aren't. I miss them. I don't want to be the only one. I am sad everyday because of it. It's too much. Sometimes I think, how can I do this? How can I get a PhD, and be a black woman with a disability. Not just any disability, but a birth defect. Not just from anywhere, but from Philly. How can I do this? I don't see many others like me doing anything remotely even close to what I am trying to do. And then I get scared, because to me, that means it must be hard. And I ask, why? Why did good choose me to survive all of this? I read the statistics about black women and minorities with disabilities. We are less likely for this, and more likely for that etc. etc. Out of everything I have read, I have quite literally beaten all the odds without even knowing it. Now I feel like that kid who had all this adrenaline running through a burning building to survive, and once I got out I look back and calapse. Somebody help me catch my breath because sometimes I feel like fainting. But things are different now because, i am in grad school and, I am not fleeing from anything dangerous anymore. Before I was running from poverty, unemployment and going back to the hood. I was desparate just to graduate with my college degree. Now that I have my masters and am working towards my PhD, I don't have that same fire or fear of failing to drive me anymore. I don't need that same adrenaline to push me anymore. I have to rely on my own since of self, faith, determination, and discipline to get me to where I have to go. And that is a totally different feeling. It's a totally different thing. And in some ways it's more scary now because I am more aware of myself then I ever was before when life was harder. It's a good thing I know, but it takes some getting used to. Don't get me wrong folks, I know how blessed I am. I consider myself a very fortunate and privileged person. Don't let this story make you think that I don't recognize how much harder my life could be. I have so many friends with my condition or similar ones who have died, have become more severaly disabled and dependent, or are just depressed and lonely. I have a rich full life and bright future ahead. I just need to vent sometimes because even knowing that, it's hard and I need to give myself permission to feel sorry for myself for a moment so that I can push myself through. Because I'd be lying if I said it wasn't hard. It's hard as hell, all of it. Life in general is a challenge. But, whoever started the myth of the super crip was lying. Of the disabled person who has more strength to endure hardships then others and is just so much more able to endure difficulties than the average person, is a liar! That is just some bullshit able-bodied people came up with to justify them treating us so badly. "Oh, look at those cripples struggling, they can take it." No they can't, no I can't. I just can't take it ya'll. It's so confusing. It's so hard. What a mind fuck. If this is special then guess what, I don't want to be. The truth is folks, that disabled people are human, just like everyone else. If I get mistreated, i hurt. If I get discriminated against, I feel outrage. I don't have a tougher skin to deal with it, I just don't have a choice, that all. That's the only difference between you and me, choice. But no one wants to hear that. That doesn't make a warm and fuzzy story for Oprah or a lifetime movie. It's not inspirational to say people with disabilities are humans that have to endure unnecessary hardship not because of their impairments, but because of other peoples fears of their impairments. Not because of what they can't do, but because of other peoples fears about their potential. And it's hard to manage, and it hurts, and it makes me want to cry all the time. That's the truth ya'll. But I don't cry, in fact I very rarely ever due. Rather, I cry with my pen and paper, my computer and my key board. I fight with my words and I punch this keyboard like it was a bunching bang. Everybody says just write the dissertation. A good disseration is a done dissertation. But they don't understand, I'm not like everybody else. This is more than a dissertation to me, this is my life, or at least a major part of it so far. This is me saying to the world, to the haters, I am not inferior than you. I matter. We matter. We are not invisible. We are here and we are able in ways that others will never know. And I am not ashamed of my disability, or my race, gender, class and ethnicity. I am human and anytime someone tries to deny me my humanity, I will come back roaring like a lion. That's what this dissertation means to me. Maybe that's too much to put on just one peace of paper. But then again, I'm too much. My grandfather told me, I'm not like everybody else, and I still believe him. When he said it, he didn't mean I was "special". He meant that I should seek excellence, and not settle for mediocracy. He loved me for who I am and he saw me. He never lowered his expectations of me because I had a disability. He always expected great things from me and if he were still alive, he wouldn't be surprised by my achievements because this is exactly what he was preparing me to do. He saw this potential in me even as a little girl. He would call me Dr. Miles when I would call him up on the phone at 9 years old. He'd say "Is this Dr. Miles?" and I believed him. That's all it took. Faith is all it took for me to beat the odds, first other peoples faith in me. Now, I need to extend their faith and increase it by having faith in myself. It's just so challenging when, it seems that no matter what I do, no matter how hard I try, others expect the worst in me. They don't even know me, and still they don't expect much, just because I have a disability. And they treat me like...like I'm nothing. Like I can't do nothing, don't understand nothing. Here I am, working on my doctorate, and most people don't think I can even speak or take care of myself. It's challenging to be confident and expect so highly of yourself when so many expect so little. But, this is the world I was given, and so I will answer God's call and do my best. It's hard, but not impossible, and I have been doing it all of my life. I know that there are many people all over the world, some disabled, some not, who can relate to my pain in their own way and suffer even more so than I. It feels trivial and wrong even to complain when suffering of such proportions as the Haitian Earth Quakes, war and disease plague our world. But, still it is necessary for me to acknowledge my own pain, so that I can be strong enough to help others in theirs. Still, I am inspired by the bible scriptures full of people who suffered and endured throughout. And I am inspired by my ancestors, who no doubt prayed for me before my birth and endured so much suffering for the sake of future generations of black people like myself. They faced unimagineable pain and suffering, fustrations and injustice the likes that I will never know or understand. Not only did my people survive, but they continue to thrive. With this history in me, I know that I am more than a conqueror through christ who strengthens me and all things are possible through him. For what can man do to me? So, I am comforted by the knowledge that even though I do not know many black women with disabilities in grad school, I do know that people have endured and conquered hardships much harders than this since the beginning of time, and have lived to tell the story, come out on the other side, and be better for it. Why can't I? Of course I can. Of course.