My views on parenting have matured recently especially since my children have fired me. Being fired has given me impetus to finally come to terms with some issues what have haunted me There are lot of barriers to being a good parent when your disabled. The logistics you have for managing your disability and children rearing are your own. As you’ll see I really don’t have any advice for you. The only thing I can say is I love my children, I tried to listen to them ineffectively as it turns out, and finally don’t deceive your children about your disability.

I have felt a strong silent undertow undercurrent unspoken unacknowledged emotional primal opinion that persons with disabilities visible or invisible shouldn’t be parents.

My family of origin knew that my disability was congenital, that much was acknowledge but everyone assumed it would never appear again. I was the one that won the lottery. History has shown that I didn’t in fact win our families genetic disorder has appeared many times in my own family line and others cousins and remote cousins, I know our disability has appeared time and time again. If you’ve been reading you know no one in my family of origin talks about “it”, the genetic disorder, still. Worse those who have children with the disability think they can raise their child better and don’t leverage the learnings of us who have it. There is so much bitterness mistrust and hate because of the silence.

I can sort of get my head wrapped around my family of origin’s intolerance for their own genetics. In Calgary I’ve noticed a pathological denial of anyone’s needs. There was a severe air quality issue here recently from smoke from forest fires. There was an interview on the news the sums up the feeling here. The soccer practice was going on in the background with the smoke clearly visible. The health department had issued a very pour air quality advisory. The practice should have been cancelled. All the coach had to say was his players had to tough it up and deal with it themselves it wasn’t his problem. That pathological lack of consideration is so prevalent in Calgary now. Its strange, Calgarians used to be friendly but now they are unfriendly and inconsiderate. It used to be a attitude of the rugged westerner self sufficient, independent and strong, who could do anything, now its pathological indifference. I suppose I can be understanding of my families pathological view towards a genetic condition that has affected a very large percentage of us. Still silence.

My sarcasm is getting the better of me. I really can’t be understanding. I grew up pathologically independent. If you even tried to help me I would put you out of my life, indelicately. I’ve learned as I’ve aged that no person is an island and so it is with me. As I’ve become content with myself and my life I’ve learned to and welcome others help in my life. My life is far more gratifying now then it has ever been.

Growing up my sibling hated me, she was jealous since she felt I received all the attention. My sibling you can have all the attention from our parents. As I’ve matured I’ve become uncomfortable with their attention as it seems its all about what’s in it for them, its all perception. Its all about the kudos’ they can get from others. If there isn’t any reward to be had there was no attention. I assure you sibling you didn’t miss anything. Apparently I was raised differently than my sister. I think after my brief parenting experience that I was more managed from afar as I remember a lot of time with other relatives over the years. I was managed out. After spending most of my adult life living away to get away going forward I’m more comfortable with that the strategy of being afar, being away, apart.

My family of origin knew about the genetic disorder that appears as Ocular Albinism. They knew enough to know the mother was the carrier and the son’s were the one’s affected by it. That’s all I was told. It’s a hard thing when you’re looking for a mate to consider who would want you, who would want to mother your children because you know you have a genetic disorder. How do you tell a potential mate that you have a disability? How do you tell a potential mate that you potentially have a genetic disorder, that might affect the children? Its a cruel thing to be human and be pre-programmed to propagate. It’s a cruel thing to want children, to so desperately want children that you want 10 of them. I am a person full of love and the ability to give lots and lots of love. I love people. I so wanted to be a parent. In the end, how did I do it? I compromised, I settled. I became a husband and a father for all the wrong reasons and am now living with that disaster.

Those of you who have read my blog over the years know how bitter and angry I have been with my family of origin. For the impact their silence has had on my life and the lives of my children, let alone the others that have been affected by our genetic disorder, Ocular Albinism. I have come to a point where the anger is fruitless. I can now forgive but I still don’t want these people in my life. I don’t want people that will enable a lie, that I’m not really blind and that I don’t really need accommodations. My feeling crosses a broad spectrum of people; family, friends, etc.. I’m now openly blind, because I am, blind.

I found out how my disability propagated genetically and published that long ago in this blog. I made that information available to anyone who needs to know. I feel for my daughter who knows that she does in fact carry the genetic disorder. The last time we talked she was adamant that she didn’t want children. I knew that I wanted to be honest and not lie to my children. I think I’ve done that in the context of the genetics of the disability but not in the living with the disability. For that is my sin. I have lied to so many about the impacts and the true nature of my disability. Coming out blind I’ve alienated my children. My friend who told me that others once they find out the truth of my disability may wonder what else I’m lying about. My children are having to do that processing what else did that bastard lie about?

I wasn’t prepared for the choice of potentially passing along a gene that might one day create another being with my disability. I wasn’t prepared for the impact on self esteem, self image, self respect and dignity, knowing you have a genetic disorder. Now my daughter has the awful thing to consider. Do you bring a child into this world with a 50/50 chance of being blind? Do you conceive a child and test for the disability? Do you decide to keep or abort the fetus based upon the test results? All terrible terrible questions. I wasn’t prepared for it and I know my daughter isn’t. It’s so hard.

I had the same thoughts when I was considering having children. Then you apply that logic to yourself. You look at yourself in the lens of a genetic disorder. Its not a healthy thing to do. Should I be here should I have been killed at birth like so many other people with disabilities. Should I have been sterilized or allowed to have children. So many others here were not allowed to have children and were systematically sterilized. Should I have been one of those. Do I deserve the investment from humanity to live, to love to contribute. What kind of person am I? What do my choices about having children say about how I feel about myself? Do I invalidate my value my existence by not having children? There are many that would say that I’m not worthy.

There are those that judge the quality of life I have. “Oh that poor man for losing his vision at so young an age.” Please my physical disability my blindness is so much less of a disability than ignorance, intolerance, and stupidity. I’m sorry I’m not the disabled one. Those who would judge my life accomplishments and contributions as lessor are the ones who are lessor than I. Harsh, well yes, if you think I’m lessor because you couldn’t live a life with my disability, or you think people with disability shouldn’t live, I think your trash. I’m on the front end of the curve of contribution and life impact, disability included thank you very much.

It will take me a long time to forgive those that lied to me about my disability and the impacts that those lies have had on my life an the lives of my children. I can understand my children feeling the same about the lies I’ve told them in the past. For not being open about my disability. I hope my children don’t decide I lied about my passion for them and my love for them. I hope it doesn’t take my children as long to forgive me and consider including me in their life again. I’m prepared however for never seeing them again as I’m not prepared to let those in that have lied to me. So how can I expect my children to be more forgiving to me.

Ultimately the questions of propagation when you have a genetic disorder are daunting requiring love intelligence patience spirituality and faith. Faith that each of us no matter has a purpose and a right to live and be alive. Emphatically this has been the hardest thing for me has a person has ever had to deal with. I almost jumped off a building because in grade 10 my social studies teacher introduced the subject of eugenics and genetic engineering to the class. I wasn’t ready for the implications of the curriculum. I almost didn’t survive as a person. That single series of classes based on eugenics and genetic engineering, that incident has been so impactful on my thinking about: genetics, disability, my disability, myself and my children. It has taken me over half of my life to come to terms with it all. What conclusions I have come to are:

  • You have a right a purpose to be here, to live.
  • As a person you own the choices you make.
  • Be honest open about them, live with integrity.
  • Don’t settle.
  • It’s really O.K. to decide not to have children, society isn’t terribly supportive but that’s societies problem.
  • It’s really O.K. to decide to have children.
  • Have faith, you never really know what you’re going to get; big or little, disabled or not.
  • Don’t lie to your children about the genetics and issue they may encounter.
  • Don’t lie about the impacts of the genetic disorder

I still love people. I still want 10 children. I still love all of my children and all of the children my life has touched. There are many of you that I’d love to hug again or have in my life on a daily or regular basis. I have no parenting advice other than being lowing open and honest. I think people with disabilities genetic or otherwise invisible disability or visible disability should be parents, if they choose to be.

About the Author:

Kyle has ocular albinism and has been legally blind since birth. Kyle leads a very active live and is besides his professional career involved in many projects for persons who are different.

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