Anonymous said: I just read your new post and it is thought provoking but it is also leaving me with a question as to what is specifically going on and how can friend/friends help in a specific way?
How does one ask for a shot at life? How does one ask for a job, education, and an a place to live. How does one ask someone to be an emotional support system. Anyone that I already call friend is doing what they can as far as I can tell.
In the last month and a half, life as I knew it has collapsed. Nearly everything that I loved about my life has disappeared in a very short period of time . I am left once again trying to rebuild the pieces of a life that wasn’t very manageable to begin with . I am stuck, heartbroken and scared. It has left me wondering where G-d is? Where is the Almighty? As the world falls into war in Gaza while the death toll breaks into the thousands and I am not ignorant to the fact that people all around the world are dying from things that are easily preventable at the same time. I am experiencing the greatest pain amidst this profound sense of loss and hopelessness .I have ever encountered such pain as this; and It all happens on G-d’s supposed loving watch.
So if evidence of G-d is not in the big problems around the world that touch those without the privileges I have as a white cisgendered heterosexual male, and G-d is not evident in my most desperate place, then I have to wonder if G-d is truly all powerful and present. The title of Almighty does not seem to fit at all. I have been trying to work my way out of the systemic problems I face while facing the everyday struggles that everyone deals with in what is the called the human experience. It is clear that I am in place where I need help at even having at shot at having a life. What do you do when you have done all of the right things to get help and be healthy and you still can’t break through? This is what is systemic poverty. Coupled with ableism this means even less choices, even more shut doors in your path.
A few weeks ago I was venting to a friend over email. I was sharing my frustration of trying to do what I needed to improve my life situation. I was contacting all of the organizations and showing up to all the appointments with government agencies. I was filling out all the forms jumping through all the hoops and still running into closed and locked doors. I said to this friend that things can’t get better unless someone on the other side of the door of privilege chooses to unlock and open the door.
In this time of life collapse I have had a few friends do their best to put their life on hold and show a willingness to help even though they lack the ability to bring about the solutions. Those who want to help can’t; those who can won’t In this time I have received a lot of advice from people who mean well, but much of it is bad in my opinion. Someone in my life has that I must see G-d in the withholding that I face in life. This notion seems clever and profound but is nothing more than a very eloquent cop out answer to avoid the anxiety of having no answer.
Matthew 7:8-10New International Version (NIV)
8 For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.
9 “Which of you, if your son asks for bread, will give him a stone? 10 Or if he asks for a fish, will give him a snake?”
My close and dear friends Luke and Jill invited me to stay with them for a couple weeks at their home in Virginia to see if at the very least I can heal a little bit. They have the most beautiful family and home as well. Unfortunately, the house is rather inaccessible although as I said beautiful. Luke and Jill both found this unacceptable one of the most touching this they have done besides give up their own bed so I could be comfortable, is they removed any door that I could not fit through. It has been rather amazing to once be withheld from entering a space I needed to enter into then be later unencumbered and have freedom to move and get what I need. Life in this house would be unmanageable with those doors in their former places. It has left me wondering about the email conversation. What if we dismantled the doors of privilege? I think love is best when the doors are removed. I am not sure where G-d is as my life has collapsed and became unmanageable, but I know that love can’t be love if it is behind a shut and locked door.
The other day I was telling my boyfriend about this one dude I met who one day just up and decided he was going to move to Hawaii, and just packed a suitcase and left. He lived on the beach until he was able to find a job and a place to stay. Then when I was finished telling the story, my boyfriend, a person with a disability and I, a woman both looked at each other like “Yup, must be nice to be a white, able bodied, male”
an actual conversation with between my girlfriend and I. social mobility is a bit of a conundrum sometimes
first sample of my very first batch of kombucha
Last week it was one of the rare and wonderful weeks where Alyssia and I get to be together. Unfortunately, I took one of the worst falls I have ever taken to date. It left me in a high amount of pain and bedridden for the entire week. It was unfortunate and rather disheartening. Alyssia is very concerned when it comes to me being in pain. She can’t stand it; and often it brings her to tears. I attempt to reassure her by letting her know that pain is just an inevitable part of my life. Pain is a common part of the experience within disability. I deal with a fair amount of physical pain in my life with Cerebral Palsy. I have to try to hide it from others. I find it tends to muddle perceptions of me. If I let people visibly see I am in pain I have experienced a loss of identity outside of being in pain. I stop being a friend or peer and become a focus of sympathy.
I experience this with the emotional pain as well the accompanies aspects of living with disability and the effects of ableism. Watching someone experience pain causes us discomfort; and this isn’t a negative thing. It is how we react to this discomfort that makes our discomfort with pain positive or negative. Pain is a biological reaction that points to something that is not working and needs to be addressed. I have intrinsically through merely living my life, developed a built in place of expertise. I begrudgingly accept this when talking about disability liberation There are many reasons why I write and choose to be open about pain I experience. Yes, I do it because it’s a bit cathartic. Yes, I write because it allows me space to show common threads between myself and others. I also write especially in regards to disability liberation, to give others voice that may not be able to communicate as easily as I can. In all honesty, my primary motivation in sharing my experiences and pain while living within the constraints of the label that is disability is to point towards these things that are broken (i.e, societal constructed mentalities, socioeconomic constructs). I have observed many people’s discomfort when speaking about matters of social justice (and I believe that disability liberation is a grossly overlooked social justice issue) but I have seen an unique manifestation when it comes to the realm of disability liberation. I do understand the nature of this discomfort. It is difficult and disorienting to view life as you know it from a different lens.
In the relatively short amount of time that I have devoted a portion of my life to speaking and writing about disability I have come to a few realizations about how able-bodied brothers and sisters react to what I have to say generally. Some try to encourage me to be more like a motivational speaker and tell me about some other crippled speaker that they have enthusiastically liked. This is rather common, often my words or life get reduced to a very shallow definition of inspiration. They see liberation from the body constraints as the only necessary aspect of disability liberation while the social and cultural constraints remain ignored. There is a preference to “people who don’t let their disability get in their way” type of messengers; those who only speak of the triumph of finding a way to live like everyone else in spite of disability In a sense, those who fall into this category are communicating that they only wish to be left feeling good about their way of life when in contrast, this way of life is one of crippled brothers and sisters biggest opponents to living in the simplest terms Some have sympathy and quickly rush to encourage me in order to shield me from the pain I experience, cheating themselves of the opportunity to sit with their discomfort; and ask the important question of why things are the way they are presently. I meet others who are open and willing to engage these new ideas and perspectives but feel overwhelmed and ill-equipped to do anything and as a result, quickly move on. Finally, there are the rare few that I encounter who hear my words or others who share a similar message, and can no longer remain idle. These brave ones decide to start talking about these issues, educate themselves further, and make the crucial choice to partner along side those of us pressed under the weight of the oppression that is ableism. I have seen this less than a handful of times; but this is what I truly aim for in my work.
I would like to end by saying I deeply love and appreciate when people take the time to read what I write or listen to me speak. If you feel a heartfelt desire to encourage me or give sympathy when I share the raw and vulnerable emotions I feel at times then please do so; I do value it and know it is from a place of good intentions. Just know that it is not what I seek and ultimately its impact is short-lived. If I am to be called an inspiration then I want it to be something earned. To be inspiring, it means I invoke actions towards change in others. If I am not doing that then I am a failure. I am just a nice distraction. Through hard work I may be able to overcome certain struggles I face personally, but change won’t happen for us all unless you, the able-bodied ,move and are idle no more. When the victory bells have rang out in the battles for equality in the past it has always been because those who don’t experience inequality’s sting decide to take on its sting in solidarity of those who don’t have a choice Remain uncomfortable my friends.
She makes me happy, She brings me more joy than any other person ever has; and I want to do nothing more than return the favor. Alyssia is a dreamer. I have never dated such a dreamer before. I love her dreams. I love talking with her about them. Her dreams have become equally as important to me as my own. On the other hand, these dreams terrify me.
The other night I had a vivid nightmare. In it Alyssia and I were trying to escape a tornado. I felt the fear and Alyssia was my primary concern. We kept trying to run from the storm together but every time we found shelter I couldn’t physically get there so Alyssia would refuse to be safe if I wasn’t. At a point where there was nowhere else to run and the storm ripped her out of my arms and then I woke up.
This dream is a good representation of my fears about our relationship. Part of my experience as a person with disability is dealing with dreams being broken; and not just broken, at times dreams are crushed. It is inevitable when up against systemic oppression. You have to accept that dreams will perish. Being born into disability it is something I have come to terms in a lot of ways. I find the disappointment manageable when it only affects me. However, a relationship brings a new fear. because it will now affect more than just myself. I have no choice but to face my challenges, but Alyssia has to choose to become a part of the oppression I face if she wants to be with me. This choice may cost her her dreams. She willingly has to choose the loss of opportunities, the frustrations over lack of options, and at times hopelessness. I love her, so I struggle with this prospect. How can I watch her heart be repeatedly broken?
I have this bad habit in response to this fear. Periodically I try to logically convince Alyssia that she needs to leave me because her life will be better without me. It breaks her heart and it breaks mine when I engage in this, and I don’t why I do it. She always responds to every logical argument of mine saying: …”but I love you”
I never want to be apart from her. I never want there to be a day where I can’t say we are in a relationship. I know that if I keep working hard that I may have a chance to beat the odds, but what gives systems of oppression their power is continual ignorance. I can’t deny that Alyssia runs the risk of missing out on dreams realized by staying committed to me. I am unbelievably thankful that she responds to my fear with “but I love you.” However, I still know the depth of the storm that chases us and I don’t want her to be torn apart by these external forces. We won’t win this alone, but I hope that others will fight with us as we fight for ourselves.
People often say: “C.J. you have such a different look when Alyssia is around.” I always thought it was strange until I saw these two pictures. The top was taken earlier today just before we left for the airport after spending a week together. The bottom was taken a few minutes ago after coming back without her. This week we found out that my application for low-income accessible housing was denied by the Pittsburgh Housing Authority and the waiting lists have been indefinitely closed. Our future just got a bit more uncertain. The end to our long distance season is no longer in sight. The only thing that is for sure is how much we love each other.
Proper beard grooming is a necessity before a speaking engagement.#ineedabiggerbeardcomb #gloriousbeard @The Lutheran School of Theology at Chicago