Raising My Parents

I went to therapy for the first time in several months today. I told my therapist that I was so happy. Life isn't perfect, and there are major challenges that still exist in my life. But in spite of all of that, I still felt happy generally. A major source of my happiness was my mother's sobriety. She has been sober for almost 2 years now. I told my therapist that I was just beginning to trust her sobriety. That I was really proud of my mom and that she has changed so much, that her change has inspired me to change and lead a better life. I said that although I don't know how long the sobriety would last, and that I did initially feel some anger towards her after she got clean, mostly I was just grateful. Grateful that she was happier than I had ever seen her, and that she had survived her addiction. I was just so grateful that her addiction did not kill her. I was just grateful that her addiction did not kill our family, that we survived it. I said that I knew that my family wasn't perfect, because I am not, and that there will always be problems, but I felt more confident about my ability to accept our limitations, live with them, and love each other regardless. But mostly I was just so happy about this new found relationship I felt was growing between me and my mom. I was happy that her addiction and dysfunction was no longer a stresser in my life. I felt so happy to be free of it, the stress and the worry. So happy to be free of the worry of whether she was going to call me drunk and high today, or remember our conversation yesterday or whatever.

And I have told her consistently since she got clean, what her sobriety has meant to me, and how proud I am of her etc. I told her how stressful and difficult her addiction has been for me, and how it has impacted my life. At first she was very defensive during these conversations, but eventually she was able to listen and she has said more than once that she is sorry for hurting me, and that she felt really bad about it, and really guilty. I told her that I forgave her and that I didn't want her to feel guilty. I told her that I just wanted her to be healthy and ok. I said that we have to accept our past and look forward to our future so that we can move on and build something better together.

So, for the last almost two years, I was beginning to be happy about my mom's sobriety, but I tried not to enjoy it too much. Tried not to trust it or like it, because I didn't know how long that it was going to stick around, and I wasn't used to what it was like. You know how you almost prefer experiencing the crap that you are used to, then to embrace the happiness that you don't know, for fear that you might loose it? I found myself wishing she would just hurry up and drink already, so that my anxiety about her relapsing would disappear. That was me for a long time. I was just like, "Nope, don't trust it. Not yet."

I spent a weekend and 1/2 at home in Philly for Thanksgiving with little drama. I had fun! I didn't want to come back to school. This was my second "good" visit like that at home, as my summer visit for a week was positive too. So, I had two consecutive visits at home with less stress and more fun then I had had with my family in years! And with a sober mom for the first time sense I can remember. My Thanksgiving visit made me really excited about Christmas. After almost two years I thought, finally I could exhale...

Then tonight happened. I called my mom to tell her something funny before I went to bed. I had just spoke to her about two hours earlier. But, this conversation was different. She sounded "funny". She didn't even remember that we had spoken two hours earlier, and kept repeating herself, in a conversation full of "Umms, and ahhs" that was all too familiar to a previous time in our lives. I didn't want to believe it at first. I kept saying to myself, maybe she's tired, maybe she took some aspirin, or something. Finally, I said "Mom, what's wrong?, What's up? You sound funny. You sound strange." I didn't want to accuse her outright. Maybe I was wrong. But, I guess the good news is that she admitted it. "Yea, I've been drinking. But not much. Just a little. You know, drinking was not my issue, that wasn't my problem. Cocaine was." She just kept saying how happy she was and how good she felt. I said I had to go. That I was not happy. That I thought she was drinking, and that I needed to go. And I just hung up...

So, now what? It's late. I called some friends to vent...maybe cry... but everyone in there right mind is asleep now. This happened at around 11:30pm. So, I came up with the great idea to blog. At least I'll get this stuff out, and maybe someone will have some encouraging words or advise. I don't know. All I kept thinking was, why now? Not that there would ever be a good time, but now? I just don't know what to do, or how to feel. I mean, what is the appropriate response to this type of thing? She is an addict. Maybe I should just be grateful she lasted this long. I don't know.

I am so hurt. Really, my heart is broken. I struggle so hard to take care of my own feelings, because I also want to be respectful of hers. I guess I got to have more respect for this disease. It is serious. It's some bullshit is what it is. You know what my first response was after I hung up? Anger! Sadness. Despair. Like this is never going to end. And I just don't know if I can do it folks. I don't know if I have it in me. To go through years of back and forth with this disease with her. Years of a tug of war. I've seen it with my aunt who is an even more serious addict. I mean my aunt will go missing for months, been to jail, lived in crack houses, the works, since she was a teenager. My aunt is now in her 60s! My mom is 52. My mom is more of an in house drunk and addict. Many people never knew she had this problem for years accept close family. She hid it so well. She was a functioning addict for years until she lost her job and it became difficult for her to maintain her addiction and employment about 10 years ago. That's when things got really bad. But we knew, us kids always knew something was up, even when we couldn't name it drugs and alcohol. I hoped that we had overcome all that...but I guess it's gonna take more. I don't know.

I was supposed to go home today. I have a train scheduled to take me to Philadelphia. Guess I got to make a decision. My first reaction was to stay here. Don't go home. Not just because I wasn't sure what situation I was going home to, but because I wanted to punish her. I just felt like I wanted to hurt her, the way she just hurt me, and me not coming home, that would do it. She always looks forward to me coming home, especially for Christmas. I was just about to start packing. I was just calling to say goodnight, see you tomorrow, and she pulls this now? NOW! This is some serious bullshit! I just feel like, God, are you kidding me? Like, why? Why would you give me these parents? You know how people talk about heaven, and they will say God decides like, "Now this baby, I will give to so and so?" Well, I don't think that's what happened to me. I feel like, God said "Now these two parents, I will give these two to Angel". But why? Why would he give me the type of parents that I have felt emotionally and socially more mature than since I was at least 13 years old? Why do I feel like I am raising them? I'm tired of it. I don't want to raise anybody but my kids if I have them. They want to act a fool, act like they got all this time in the world, so be it. What can I do? Nothin.

So I have to decide whether I am going to go home or not. I just don't know. Will not going home punish me more than my mother? And what will any of it accomplish? I was so looking forward to it. Now I am just so very disappointed, again. And hurt. Just heart broken. I can't cry any more. I don't have any tears left. It is what it is. Life isn't fair is the biggest understatement I know. And I know I am really blessed and all that and blah, blah, blah. I know that it is possible that she will overcome this and everything will eventually be ok. But right now I just feel really shitty. Like all my dreams had come true at once, and then it was stolen from me before I got a chance to really enjoy it. Because the truth is, everything could not be ok too. She may never be sober again, or she may go in and out of sobriety for the rest of my life. And I just have to be ok with either of those possibilities. And right now, I'm just not man. I'm not ok with it. It's not cool. It's not ok. I don't deserve this. I deserve a sober mom...crap, tears...there they are...where was I?

Yes, I was saying that I think I deserve a sober mom, as everyone does. I didn't ask to be here, and yet I am. I deserve a healthy mom. Not a perfect mom. I just feel like I ask for so little. I don't want money or nothing. I just want a sober mom for Christmas. I just want a happy family. I thought I was going to have it. That's all I was looking forward to this Christmas. And I just lost that possibility. I am just morning that possibility right now. That's all. Because this means that I have to go home and put on this shell to protect myself. It means I have to keep my guard up to be prepared for anything. I was going to have one on anyway, but my shell had softened considerably. But, now that's over. I still don't know whether I will go home or not. But one thing is for sure. If I stay, it won't be to punish my mom. She is doing that well all by herself. If I stay, it has to be for me. To take care of myself, and because I think I will be safer and happier here, alone, even if that is not what I want.

Man, talk about bad timing. I need a break from school and the stress of writing a dissertation. Doesn't look like that's going to happen. I really looked forward to writing this dissertation with the conscience that my mom was sober and that was one less thing to worry about. It really felt good and made me so, so happy. I just can't tell you. It made all the difference in the world, even just for a time. Maybe I should just be grateful for that time.

I just struggle with my feelings because... I am angry and hurt at my mom, but I also love her so much, and I am full of concern and... I understand. I understand how she could relapse. I sensed that this was a possibility for a few weeks now, because she had not been going to church, had expressed feelings of anxiety to me, and had not seen her doctors about it for quite some time. She had been without her meds. So, I understand. It's just hard to juggle empathizing with her illness, taking care of myself, and holding her responsible for what she can control...and myself for that matter. I don't know man. This is really messed me up.

It's 1:00am and I am not packed. Should I stay or should I go? If I stay home, I will be alone for Christmas. How sad is that? I have a father that lives in this area, but he is a COMPLETE ASSHOLE. Really, so much worse than my mother. My mom is a good person and she loves me, she just has this awful addiction that ruins everything. But my father is a poor excuse for a man that I don't even have the strength to get into right now. The latest thing he pulled was the last straw for me. He told me he was sorry for the way I was born, but he was even more sorry that I have a cripple heart. He said it's bad enough that I'm cripple, but that my heart is cripple too. He thinks all this because I don't call him. Anyway, I don't have the strength to get into all that right now. I found what he said quite laughable really. But, it also hurts. So, for my mom to do this during the same week that my father called me randomly and said this...it's just too much. I need a break. Why, so much abuse and dysfunction is dumped on me, I will never know. I just don't know how much longer I can manage it, and still be healthy and reach my goals. I already cut off my father, but will I have to cut off my mom too? I really might, and that will really hurt me something awful. I just don't know if I will trust people or be able to feel close to anyone. I just think that will kill apart of me inside, because i just love her so, so much. I love her unconditionally. It just hurts, because it doesn't feel reciprocated. I know intellectually that this addiction isn't about me or her love for me, but personally I feel like, if that's true than why does it affect me so much? If it's not about me, why does it hurt me so bad? And what am I supposed to do to manage that? What the fuck! I just feel like, God are you kidding me? A disability, and crazy ass parents with addictions and mental illness? Like, who's grand idea was that? Oh, and I'm supposed to write a dissertation? Oh yea, that's totally doable. Piece of cake. Grad school professors have the nerve to want to haze me. Haze me? Haze me for what? Hazing is some fucked up process made up by privileged people to help make them strong because they ain't never been through nothin! I don't need to be hazed! I don't need any more extra shit on me right now. My life is hazing all in itself. Got the nerve to want to make it harder. These professors couldn't last a day. Do you hear me? Not a day in my shoes. How many other black women with Physical disabilities do you know pursuing their Phds? I used to know one, and she's dead. Died less than a month ago. Yea, that was real encouraging news. My other black disabled ally pursuing his PhD was a male, and he died two year ago this month. I don't know anyone else. Not to say that there isn't, because of course there is. But it sucks that there are so few, and that the only two I know, are dead. That can't be a good sign, and I am not willing to let the intersections of the oppressions in my life, fucking kill me. It's not worth it. My grandma taught me when I was a teenager that I was the number one thing in my life. So I have to prioritize myself. My health, my life, my happiness, over family, even over school. I want to succeed, but not at the expense of my health. I want my family in my life, but not at the expense of my happiness. I pray that God will help me find a way to manage all of these things, and still come out on top! I know that he has a purpose for my life. A good friend told me, that he gave me these challenges, because he knew I could handle it. Maybe that is why he gave me these parents, this disability, and this desire and opportunity to pursue my higher education.

Please excuse this pity party, cause I hate that. And don't feel sorry for me please. The good news is that these are problems that I have had my whole life, so nothing has changed really. It's not like it's a new problem that my father is an ass and my mother is an addict. My mother was an addict when she was sober. She is an addict now that she is not. I will be ok, and I will push through this. I will push through this because I know that I can, and because I know that there are so many other people that I can help, who have been through similar challenges and need support and encouragement. There are so many people that have been through far worse, and have accomplished more. As long as that is the case, I have nothing to feel sad and sorry about. Just got to do the best with the life God gave me. No sense in shaking my fist at God, cause I don't get to pick another life, or get to choose the exact circumstances he gives me in this one. I know these things intellectually, and feel them in my heart. But right now, I simultaneously feel genuinely sad for myself at the same time. Only because, this is the only life that I got and that I know. And while it could be worse, it could be better too. And I so wish that circumstances were better. I guess I have conflicting feelings inside, as humans often do. So, I am going to try to sleep on it. Give myself some time to boohoo, life isn't fair stuff, and then move on. Because life isn't fair, but God is faithful, and he has a plan. I'm a little mad at him right now, because this plan seriously looks like it sucks at the moment, but I have faith that it will change. I know that God loves me. Why else would I still be here? I am extremely privileged, blessed and loved. I will try to focus on that, and pray that God will help me figure out how to manage the rest, as he always has. Please excuse my typos and misspellings, but it's been an emotional night. Words of support and advise are welcome, and lots of prayers are especially needed. Thanks.

Lessons Learned

Well, I don't know. I feel like I need to write about this, so I'm gonna. I guess it's just for my own good, that I try to get it out. So here it goes....My dad's an asshole. It's the truth, he just is. And I am only now at the age of 30 starting to recognize this truth, and what it means for my life. I can't even begin to explain or express, the things his said, done, and worst yet, the things he hasn't done, that have hurt me so. Just damaged me deeply. And I'm tired of it, and I can't take it anymore. My mom says I should just pray for him. That I should forgive him. But all I feel right now is anger. Intense anger. I am pissed off! I keep talking to friends about it as if I need permission to feel the way I feel. Like I want them to say that I am not crazy, and it is ok for me to be sad, mad, dispondent or whatever. But, now that they have supported me and given me permission, I have come to the conclusion that I was just waiting for them to say what I already know. To allow me to feel how I already feel anyway. Annoyed, betrayed, pissed off! Just who does this motherfucker think he is? He left me! Left me, and my brother with my mother when we were just babies. I was a few months old. My mother was just in her twenties. He was ten years older than she! And he left us. But no, that wasn't it. That wasn't enough. To make matters worse, this nigga shows up to my recollection 5 years later, to make nice. Brings me gifts, and tries to get on my brothers and my good side. It works at first. But I digress. The point is this. My father has been in and out my life, my entire life. I have very few pleasant or happy memories with him. Memories where I feel comfortable, relaxed, at ease and that I can be myself. I can't really ever remember feeling that way. Being with him has almost always instilled a great deal of anxiety and fear. Why? Because my father has been verbally abusive and manipulative towards me and my brother our entire life. I so wanted him to be a part of my life. I so wanted a daught father relationship. I tried so hard. Very, very, very hard. To forgive him. To understand him. To support him. To listen to him. To be obedient. And to bite my tounge. I can't do it any more! I am so over it! If he doesn't want to change. If he can't recognize how blessed he is, to have two children, two beautiful children, who are healthy, who are good people, and who are willing to love him if he would just stop acting like a damn fool...then oh well. Fuck it! That's where I'm at right now. That's how I feel. I don't... I am tired of making excuses for him. Of enabling his behavior. Of putting his feelings above my own. I have to take care of myself. I have to protect myself, because he won't. He never has. I tried to forgive him. But right now I can't. I know I need to for me, but right now I can't forgive him because I am so damn mad! Well, let me take that back. I actually do forgive my father for not being around when I was growing up. What I am mad about is him not being around right now, when he lives in the same damn town as I do. I'm mad that he won't take responsibility for anything, and that so much of the responsibility has been on me for so long. To be an adult, because he wouldn't be. And now I am an adult, and he is still acting like a child. A friend of mine told me tonight that it is hard to realize that I am more an adult now than my father will ever be. I could get into details about what he did exactly...but I won't. Just know that it was enough to piss me off, and enough for me to say, ENOUGH! I can't take it anymore. There is only so much a person can take. And I gave him so many chances, to change, to work it out. To start over. Ok dad, so you weren't around when I was growing up, let's have a relationship now. But he couldn't. He just couldn't even do that. He let his bitterness towards my mothers side of the family for whatever reason, get in the way of getting to know me. He let his worries about why my brother wasn't talking to him, take away any enjoyment from the fact that I was talking to him. He is controlling, manipulative and a liar. He is abusive, petty, and a coward. He hurt me on way more occassions than he helped me...and I love him. I love this bastard. This motherfucker, who doesn't deserve me. I love him. And it's not because he deserves it. I love him because I feel sorry for him. Because I think he actually does love me. But he is so hurt that things didn't work out the way he wanted, and he is so ashamed of his contribution to it, and of his failures in life, that he just pushes me away. It's like, as much as he wants me around, he does everything he can to not have me there. But even that doesn't justify the way he treats me, and it's just not ok and I can't make excuses for him anymore. My mom keeps telling me to pray for him. Now she's all on this Christian kick, after she acted a fool for years, now she wants me to be forgiving and pray. She says that I should never give up and that I should be open. But I want to give up. I don't want to persue a relationship with him anymore. Am I wrong? I'm tired. He has worn me out! It's easy for her to say don't give up, keep trying. Why? Why should I keep trying? She didn't. She divorced him and moved on. He abused her, and she divorced him and moved on. Never spoke to him again unless it had to do with us. Even when I asked her why she didn't pursue child support from him, she said "I just wanted him to leave us alone." So, if that's what she wanted, how come she can't understand that I feel the same way. I just want him to leave me alone. If he can't change, and he can't, than just leave me alone. Shit, even if he can change, just leave me a lone. At this point, I'm over it....I don't know. Maybe in the future, after intense psycho therapy and an abduction from aliens that show him the light...maybe after that, we can talk. But I am not subjecting myself to this abuse anymore. And for my mom to suggest otherwise, I think is wrong. My mom and I watched this movie together on lifetime about these Amish people who's children were murdered by a milkman. It's a true story, I remember when it happened in PA a few years ago. Anyways, this dude murders a bunch of little girls while they were in school, and then kills himself, and within hours of this event, a bunch of Amish guys are over the house of the murderers wife to tell her that they forgive the murderer, and that if she or any of her kids need anything, that they will be there to help them. And I'm like, what? I mean the movie was deep and really touching. But one of the Amish mothers who lost her daughter really struggled to forgive and was basically like fuck that at first. But, eventually she forgives to. I say all that to say, you know...I feel bad for being angry at my dad. For being unforgiving. I don't know if I am completely unforfgiving. Like, I don't wish him ill will or anything. I hope that he is happy and healthy. I even still love him very much. I just can't keep subjecting myself to his abuse, that's all. Maybe that is my problem. I interpret forgiveness as, doing what they person who hurt me would like for me to do. I interpret it as moving on like nothing ever happened. And maybe I am wrong, maybe that is not what forgiveness is. I don't think forgiveness involves anger, and I am still very, very anger at my dad. But, this happened yesterday. I know I won't stay angry. I will be better in a week even. So, it's not that. It's just that, all I asked for my dad to do is to empathize with me. To imagine my hurt and how I feel and to think about that and act accordingly before he opens his mouth or behaves in a bad way. And he doesn't do that. And I don't understand because I do that for him all the time! All the time! In fact, most of my life I have. And now I am starting to get older and recent it. And I all I asked was that he start treating me a little better. Start treating me as well as I treat him. I asked him to listen to me. I asked him to put my feelings about is own for a moment. I asked him to protect me. And he couldn't do it. And so now, I have to let it go. My mom wants me to have hope. It hurts to have hope. I have been holding on to hope my whole life. I just want to accept how he is, and who he is, and let it go now. I just want peace. I can't get peace from him the way he is. It is hard to accept, but I can't. It's not healthy for me to keep trying to pursue a relationship. And I feel really bad and guilty about that. I mean, I just feel awful. I can't even tell you. I feel terrible, that I have a father out there, who loves me, and who I love, but who it is not healthy for me to be around because he is verbally and psychologically abusive. He called me a black bitch. Me, a black bitch? How could you even put your lips together to say something like that to your daughter? He has said more volitatile things to me that he has expressed words of love or adoration, and I have spent very little time with him in my life. But I tolerated it, and forgave him over, and over, and over again. I just can't anymore. And I do have faith in God and I do believe in forgiveness. But, I think I will demonstrate more faith in God by letting him go. By walking away from this situation and actually leaving it to God to fix it, because I can't. I keep thinking I can. That if I just behave better, or say the right thing, he will change. Maybe if I explain more, if I just reason with him. Because, he loves me...right? And love concours all, right? So, if I just explain to him, that he hurt me, he won't want to hurt me anymore. I mean, that's my rationale. And now I realize that I have been simplifying a really more complicated situation and using a childlike rationale to deal with a very sick man. I guess I wish I could just hear God say, it's alright. Go ahead, walk away from this. I got it. I got it all under control. I think I will be showing a lot more faith in God if I trust him to take care of my father, than for me to keep trying to fix him and this situation. I can't fix him. I am a forgive and loving person, so I know that I can be accepting and I can be open to my dad in the future and I would be willing to regain trust overtime. But, I can't make that happen, only God can. And I am not a bad person, or a bad Christian for recognizing that. I believe that God will make it clear when my father is ready to be better and to do better by me. But now ain't it. I believe that by that time, he will take away all of my feelings of bitterness and anger towards him, some of which I feel now, although justifiably. But my desire to stay away from him and not talk to him is a healthy reaction to an unhealthy situation and I must stop telling myself that I am a bad person, daughter, christian etc. for not doing otherwise. For not returning my father's call today when he said that he was sorry for all the terrible things he said yesterday and for all of the pain that he caused me, because that is not enough. He has appologized many, many times. What hasn't changed is his behavior. He knows how to say the right things to get me to do what he wants. But he will just turn right around and do the same thing once he has his way. No, an apology in a cell phone message is not enough. And even that apology was half hearted because he did not take full responsibility for what he has done. There is always a "I'm sorry, but...." I'm sorry, but I have a good reason for what I did. No, I did this and that wrong, and I need to change. I am going to work on myself more and I will do what I can to earn your trust again. That's not hard to say and follow through on. And he doesn't know how forgiving and open and willing to move on I would be if he could just do that. But, he won't. At least not now. Maybe one day, but not today. So, I need to stop feeling guilty, and stop listening to my mom or feeling bad cause I am not an Amish saint. The truth is that I am human. I am only human and I have to be true to myself and to my feelings and this is the way I feel. I am not a bad person for not wanting to speak to my dad really ever again for all of this. This is a reasonable and sane reaction to being treated badly. If you get burnt, you don't say, ooh, let me go get burnt again. You say, he let me stay away from that so that I don't experience it anymore because it was so painful. That's where I am at with this. I would be crazy if I continue to try and communicate with someone who is only going to keep burning me. Of course I am always open to the possibility of things changing, just like I was with my mother. But, he has to earn my trust again. It will not be just given because he is my dad. Part of me feels like I don't give a shit if he does change. He has done a lot of damage towards me, and I can forgive him and never interact with him again. That may just have to be the consequence of his behavior. Hopefully he will be a better person from it. Who knows, maybe me enabling his behavior is blocking his blessing. I don't know. What I do know is that I love and trust God, and that I know that God is in control, not me. I can't make my father happy, I can't make him recognize his errors, and I can't make him be the father that I need him to be. Only God can do that. So there really is no sense in me interacting with him. I know that if my father changes and becomes obedient to God, God will make it apparent to me. Like, I won't need to ask my dad or have to initiate a conversation because I will just know by the way we are interacting that there has been a serious change in him. And I didn't sense that this time at all. I wanted to so badly, which is why I put up with a lot. But, mostly the good things he did say just seemed to be him trying to pacify me so that he could be in my good graces again. I am a valuable person because I am a child of God, and he needs to treat me as such. I treat him that way. I felt tense the entire time he was talking to me because he doesn't engage me very much to the point where I am afraid to talk. It seems easier not to say anything. But, yesterday I spoke and I said what was on my mind and it didn't go well. So, I am letting go and letting God. God, I leave it to you. Please continue to bless me and my family. I am so grateful for what you have already done and the miracles that you have already accomplished within my family life. I know that all things are possible through Christ and I claim in the name of Jesus that every stronghold and ever sinful thing within my father and his relationship with me, my brother and the rest of our family is let go and overcome by the blood of the lamb. Please forgive me for my anger, excuses, and just anything that seperates me from the knowledge of you. You are my father, and I love you deaply. Please take away this burden of anger, depression, recentment and bitterness. Help me to know that I don't need to be angry at him to feel good about myself or situation, and that I can peacefully and prayerfully let go and let God. Lord, I don't trust my father, but I do trust you! I am grateful for our relationship, and I love you very deeply. Thank you for everything. Amen.

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.

Faith and Disbelief

Faith and Disbelief

I’m confused, unsure and afraid
of making the wrong choice, of making a mistake
I don’t know which direction I should go
I’m not sure of which book to read,
who to believe, or whose hand I can hold

I see where your coming from, but I disagree
I understand your feelings, but still I believe...
That life is more complicated, than we choose to accept
That there is so much more to it, that we just don’t get

I have many opposing perspectives and conflicting views
which one is the best for me, which one should I choose?

Muhammad, Budah or Christ ?
Pro-choice or Pro-life?
Academia or Activism?
Anti-Racism or White Feminism?
A Black Church...or the White?
Hate Gays or Love Christ?


I keep screaming “Lord have your way!”
Cause I just can’t figure out
how to be so sure, in a world filled with doubt
How to be confident about what’s right, when there’s so much wrong
How to turn hate off, and to turn love on

I don’t mean to quarrel with you, but still...
So much happens in Church, that I just don’t feel
like preaching love, yet practicing hate
or shutting people out because they made a mistake,
hold a different view or practice a different faith,
choose not to marry, or have a same sex mate.

We just get to bickering amongst ourselves, when it is all so trivial
Prejudice is more about mans own desires, and less about what’s biblical
So, stop denying the humanity of others, to elevate your own
Stop boasting about what’s right, cause your just loud and wrong
The truth is, life is full of uncertainties,
powerlessness and mysteries
So, stop acting like, you’re running things
When God is in control of everything
Accept that some things in life aren’t meant for us to understand
And trust and know that it’s all in God’s hands

Trivial differences won’t make a bit of sense
When my lord comes back, and the shit hits the fence!
I have many doubts, but one thing I know
That Christ was brought to this earth, so he could show
people how to live, not kill
how to use our free will
How to accept others and love
How to forgive them, not judge
So, we are wasting precious time
There’s too much confusion in our minds
and life is just much too short
for any of us to ever resort
to hatred, and greed
or misunderstands that feed
into ignorant beliefs
About people that God created
just like you and me

So excuse me, but I refuse...
To believe that Jesus is white
that straight is the only right
that Christians are superior
that women are inferior
and that’s just the start of it
you haven’t heard the half of it
so does that make me a hypocrite?
Just because I acknowledge that
I love Christ, but with the bible
I have some doubts
Like the world being made in 7 days
I mean, what’s that all about?
Like Jesus healing the blind,
and I’m still in a wheelchair
He feed thousands with one loaf of bread
You tell me, how is that fair?
But I trust and love God,
And I have faith enough to believe
That God has a plan and a reason for everything
So, who am I to judge, question or refuse
to answer his call, and to do what he want’s me to
The question I have is, how do you choose?
How do you know, which one you’re answering to?

Inside of me I have several conflicting views
Sometimes I don’t drink, and sometimes I do
I listen to Gospel and Hip Hop too
I like to date men, but I check out girls boobs
I’m just being honest, that’s just what I do
I know I’m not evil, wouldn’t that be convenient for you?
to label me as such because I don’t think like you
I can’t pretend that I know the answers, so I won’t tell you that I do
All I know is, I am trying to make the best out of this life that God gave me
All I know is, Jesus gave his life just to save me
and that’s the most important thing
so I won’t stress over trivial things
That matter to man, but not to Christ
So pay attention, and take my advice
Be strong, and do your best
have faith in what matters, and don’t stress the rest
We have only one life, and all of life is a test
there’s nothing more to it... and there's nothing less

From My View

I'm not a Jerrie's Kid, I'm Scary Kid
God Forbid, That you might live
To ever know, the half of It

I mean, isn't that what you say to yourself?
Holding your child against your chest
Mumbling underneath your breath
That's a shame, oh that's a shame
She walks with a limp, she has a cane
She uses a chair, she's black as Cain
Damn this hypocracies insane!
'Cause if you cared to know my pain
Or listened before assuming a thing
About my life or who I be
About my race, ethnicity
gender, disability
You just might stop....staring at me

But oh hold up I'm not done yet
Cause all my life I've been a triple threat
Crippled, yes but damn I'm blessed
Family, friends, and fine, oh yes!
I don't need your pity, keep your change
I gotta job...do you need something?
Stop speaking loud and slow, I ain't no fool
I teach your kids, away at school

Somebody tell me why people fear
spending life in a wheelchair
Cane or crutch, it's all the same
Some say it's God that I should blame
But I just shake my head in confusion
Wondering where people get
these grand allusions
About who should be pitying who
'Cause life just fine here, from my view