Kevin's
Blog:
Confronting
Feeling
"A condition of Truth is to allow suffering to speak" - Dr Cornell West
"A condition of Truth is to allow suffering to speak" - Dr Cornell West
When
I first started to write these blog posts it didn't occur to
me that so many would identify with where I'm at in my life. It
didn't fully occur to me that many things I'm struggling with,
others are as well. Though I do have some added
baggage, what my questions and worries are reflect those of my peers.
I have begun to truly see that in a fundamental way
I must not be so unique. So, I'm not so unique after all
and my story is in fact just the human story told from
a different perspective. The question is, what do we want? I
feel that it is a variation of the following: We
want to form emotional connections with people. We want to
interact with one another in a meaningful way. We
want intimate relationships. We want to
form partnerships and raise families. I don't wish
to attain normality, however I should want and do want the
things listed above. Relationships aren't things,
'relationship' is an abstract concept but we describe it as
an object to make it seem more tangible. The quality
and character of relationships are much more important than
mere 'things'. The theme of this post will
be relationship and sexuality (in a broad sense).
I have long been very concerned with the way people view me. I have always agonised over what prejudices people were holding against me. Everyone fears the judgement of others, it's just a little more difficult when you have something obvious to be judged for. Most people know very little about disability and less about mine. I think they usually associate disability with spinal injuries or ALS (Ice bucket challenge) or MS. Duchenne Muscular Dystrophy (DMD) isn't near as common as those three (collectively). I want to start to change the way people think of me, I'd like to take some control over the narrative. There is a lot of ignorance among the general population and shockingly among health professionals as well. The scientific literature is lagging woefully behind what the reality of disability is, especially when it comes sexuality and relationships. So even if you Google 'DMD' it is very difficult to find anything that's really having an in depth look at those issues. The medical community seems unwilling to bring it up, so I will.
To hit this head on I'm going to be direct. DMD is a disease that effects the heart, lungs (the diaphragm), and mostly skeletal muscles. The male reproductive system is not affected by DMD in my experience or to my knowledge. I do not know what people think I'm capable of as they seldom ask and when they do its because they're drunk (hilarious). I can understand that sex is an issue your not really meant to discuss (in the disability context at least). I imagine that many people are just trying to be mindful of the sensitivities of others. If you are curious about anything to do with a persons disability, just ask. If you approach your curiosity it in the right way and respectfully, no one really has any reason to be offended. It's just a part of life, I think it's time we stop being so unwilling to examine our beliefs about sex. That is especially true with regard to persons with disability. Humans are inherently sexual, even the disabled ones.
It isn't sex so much as it is intimacy that is a concern of mine. It's something you are very unlikely to come by unless you are in a trusting and communicative relationship. Intimacy is a kind of communication itself. What is it communicating? Love, an emotion so visceral and primal. So innate as to transcend even time and space. If I could answer the question 'What does it mean to be human' in one word, it would be love. Love is essential to life. Without it I don't see how anyone could survive. If you could survive, I doubt you'd thrive. Tough there are many who love me, I am only human and I long for more. I long for something that family cant give you and friends are unlikely to share with you. There is something different about being with someone in a romantic sense. For this, there is no surrogate.
I'm never really sure how much detail is appropriate, but I have been brief so as to avoid over share (for my sake). I shall go more in-depth into my thoughts about love, relationship, and intimacy another time. It is an extremely difficult topic for me and most other people I'm sure. As I said in the first post, I hope to access enough courage to speak the whole truth about my thoughts, feelings, hopes, dreams, and fears. The Truth shall set you free. Until next time, peace and love to you. Kevin J
I have long been very concerned with the way people view me. I have always agonised over what prejudices people were holding against me. Everyone fears the judgement of others, it's just a little more difficult when you have something obvious to be judged for. Most people know very little about disability and less about mine. I think they usually associate disability with spinal injuries or ALS (Ice bucket challenge) or MS. Duchenne Muscular Dystrophy (DMD) isn't near as common as those three (collectively). I want to start to change the way people think of me, I'd like to take some control over the narrative. There is a lot of ignorance among the general population and shockingly among health professionals as well. The scientific literature is lagging woefully behind what the reality of disability is, especially when it comes sexuality and relationships. So even if you Google 'DMD' it is very difficult to find anything that's really having an in depth look at those issues. The medical community seems unwilling to bring it up, so I will.
To hit this head on I'm going to be direct. DMD is a disease that effects the heart, lungs (the diaphragm), and mostly skeletal muscles. The male reproductive system is not affected by DMD in my experience or to my knowledge. I do not know what people think I'm capable of as they seldom ask and when they do its because they're drunk (hilarious). I can understand that sex is an issue your not really meant to discuss (in the disability context at least). I imagine that many people are just trying to be mindful of the sensitivities of others. If you are curious about anything to do with a persons disability, just ask. If you approach your curiosity it in the right way and respectfully, no one really has any reason to be offended. It's just a part of life, I think it's time we stop being so unwilling to examine our beliefs about sex. That is especially true with regard to persons with disability. Humans are inherently sexual, even the disabled ones.
It isn't sex so much as it is intimacy that is a concern of mine. It's something you are very unlikely to come by unless you are in a trusting and communicative relationship. Intimacy is a kind of communication itself. What is it communicating? Love, an emotion so visceral and primal. So innate as to transcend even time and space. If I could answer the question 'What does it mean to be human' in one word, it would be love. Love is essential to life. Without it I don't see how anyone could survive. If you could survive, I doubt you'd thrive. Tough there are many who love me, I am only human and I long for more. I long for something that family cant give you and friends are unlikely to share with you. There is something different about being with someone in a romantic sense. For this, there is no surrogate.
I'm never really sure how much detail is appropriate, but I have been brief so as to avoid over share (for my sake). I shall go more in-depth into my thoughts about love, relationship, and intimacy another time. It is an extremely difficult topic for me and most other people I'm sure. As I said in the first post, I hope to access enough courage to speak the whole truth about my thoughts, feelings, hopes, dreams, and fears. The Truth shall set you free. Until next time, peace and love to you. Kevin J
No comments:
Post a Comment