Family Devestated

I am working on a social model for acceptance of disability, integration, impact on social groups such as families, etc. In the thinking I’m doing I look at my own family experience. Disability has devastated my family experience. I know from my life experience that a lot of families are a miss mash mess but I also have seen a lot of interesting functional families. Perfect families, I’m not convinced they exist but functional ones do, I have seen them.

Its a hard thing to believe that the world, people, work, friends, family can be different. On my journey of healing I had to work through a big chunk of disbelief. I had to have patience and faith that other types of people do exist. I’ve learned through trial and error and time that indeed healthy people do exist. People that will accept me out as blind do exist.

I can only imagine the shattered hopes and dreams of a parent that has a child with a disability. Parents often come with hopes and dreams for their children. Wouldn’t it be nice if little Johnny / Jane would do and be X, Y, or Z. All parents fundamentally want to do what they can do to position their children for success in life. Grieving these hopes and dreams in my opinion is unnecessary. Keep the dreams and help Johnny / Jane deal with the logistics of their disability.

Its when you write off your disabled child that they become handicapped. Any of the advocacy work I’ve ever done is show parents with disabled children that you can indeed be successful and have a life with a disability. Children of these parents are often relived as their parents will now stop treating them as if they will never amount to anything. The revelation of hope is amazing.

Having a child with a disability in a family context that doesn’t acknowledge the congenital disability is disastrous. I speak from experience. There was no way to talk about my disability in my family as those that were close to me with the disability denied and lied about not being disabled. I was always told that no your uncle isn’t blind like you. Actually he is but his own kids tell me he’ll never admit it. I was the secret the elephant in the room that no one talked about. I was the hidden secret that was out in the open like a sore thumb. I was the bastard, leaper, embarrassment, disappointment incarnate.

I come away from my family of origin feeling neglected and abused. I come away from my life feeling ashamed and embarrassed of who I am. I come away feeling like I’m not good enough, my life isn’t good enough, my family isn’t good enough, my job isn’t good enough, I’m a disgrace, a disappointment. I feel ashamed of myself, abandoned and I feel like I’ll die if I talk openly about my disability. I feel like I’ve been abused and told not to tell or I’ll be unlovable.

A family that openly acknowledges a congenital disability would be a dream. A dream I haven’t experienced. Learning from others with the disorder and building on their success. Having hope for the future. Belonging, being acceptable, lovable, someone to be with and have pride in. A dream for me. Parenting is like getting a box of chocolates. You really don’t know what your going to get. The ideal is a parent or parents that can get over a disability and get on with parenting.

I’ve been disowned disavowed many times in my life. I know the pressure of not being good enough that I felt has transfered to my children. It nearly destroyed my son. The pressure the not good enough messaging destroyed several of my relationships with woman in my life. I wish I could have found out if I was compatible other than having the relationship end because of the constant “your not good enough” messaging. I wish I’d grown up much sooner than I have. If only if if only.

I’ve moved away from my home town and only returned recently. I don’t maintain relationships with my family of origin. I can’t get past my bitterness currently. That will pass in time. What kind of relationship I build in the future is still a decision in the future. Right now I don’t want the “not good enough” messaging to impact me or my new marriage. I’m happy and content in my life currently and I’m willing to protect that however necessary.

In my life when I was still hiding my disability I would choose people to be with that were enablers. They would tell me how to dress they would tell me I’m not blind. They would let me turn off adaptations and accommodations I need because I am blind. They would tell me you can do it with out this or that. I was greeted at my guide dog graduation with, not a hello, but a “see you don’t need a guide dog”. Disappointing. These enablers in my life were not good for me not healthy, not accepting, only demanding more. They undermined who and what I am as a person. Understanding the pattern and choosing to be away from the messaging of disappointment and embarrassment is liberating. Being openly blind I can now learn really what I can’t and can do and see instead of pretending and rationalizing to myself that I’m not blind. You can get away with a lot by guessing and pretending but that house of cards will always crash down.

The people I have chosen to be around historically had their self esteem tied to serving others to feel good about themselves. I felt like I had to oblige them so they could feel good about themselves. Ultimately I realized I didn’t matter as no matter what I did or attempted it didn’t matter. I was left empty feeling like a side show event at the cicus. Not a good mix. When I came out blind I alienated almost everyone in my world my extended family, my friends my family, my siblings had been alienated forever anyway – supposedly I received all the attention, my wife – now x wife, my children.

My children are in a mess. They have no idea who and what I am or why I’ve changed their lives so dramatically. I feel for them and pray for them. I hope they can survive and thrive even if they never talk to me again. I hope I’ve changed the pattern.

I have seen a pattern in my family over the generations of issues with siblings, parents, children, significant others, husbands, wives of those affected with our congenital disability. I have seen siblings ripped apart the one impacted by the disability and the one not impacted by the disability directly but raising a child impacted by the disability. I won’t let my disabled child grow up like you. I won’t let my disabled child talk to you or learn from you. Or with the denial. I’m not disabled like you. You don’t have anything in common with me. Its a mess.

My recovery is on-going. Being open and honestly blind is a learning process of self discovery. Acknowledging the anger and pain of having to be the one who must be hidden because I’m embarrassing and disappointing. Having to put on the show and prove that I’m not blind. Working through the issues and recovering. I’m glad its something I’ve accepted I’ve found peace and self contentment. If my family can live with that great if not, great. I’m in a better place to live my life. I do desperately miss my children though.

Posted in: Living

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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