Change is Good

A Little Change Is Good Podcast
Patterns of group behavior get passed on through a team or family.   From generation to generation what the individuals in a family do or don’t do to grow profoundly impacts the next generation.    I have learned the hard way about family issues passed on to me and unfortunately passed on to my children.   As I have aged / matured I now have to deal with many issues that those in my family in the past didn’t.
My family is very spiritual not necessarily religious but spiritual.   As such a disability that is passed along through the family is a curse, or punishment.   You are being punished for a sin if you get it or if you pass along the condition to your children.   I used to get so frustrated because no one would talk about “it”.   No one would share what the people impacted by blindness had learned.   People would judge, generally negatively, how a cousin or mother or aunt or uncle either lived with the disability or parented the person with the disability coming to the conclusion of I’m not doing that to my child.
Effectively there is no sharing of what worked and what didn’t in my family.  Only denial of the eye condition itself by individuals and those that enable them; only judgment that of what you’ve done as an individual with the condition or the parent of the affected person.  I used to get so frustrated as I knew I was reinventing the wheel.
My grandparents actually took me to see a faith healer who was supposed to help reduce or eliminate the effects of ocular albinism.   It didn’t.
I don’t believe that my existence is a “sin” or that I am or my parents are being punished because of my eye condition.   Frankly I rejoice in my differences.   Too often the world gets wrapped up in being the same.   Try living a life where you are different and you will always be different.   Then you will have walked a mile in my moccasins.   I do bring tremendous value to the world with my different view of it.
I applaud the work my parents did facilitating my integration into the mainstream and teaching me how to advocate.  My mother has told me that she raised me to advocate and to drive my way through life.   In a lot of ways I get paid for the skills she passed to me.  I am an excellent organizational change agent.
I would love the nirvana state of:

• Learning from those that have come before me on what worked and what didn’t work
• Being able to pass that information along to those that follow me
• Supporting and being supported by those that share my condition
• No guilt or shame over the existence of the condition in the family gene pool

Instead I live in a family where the topic of blindness is taboo and forbidden.  Where experiences are lost and support from others is nonexistent.   Connections with those who are affected not facilitated and not supported.    In the end my extended families attitude is a huge handicap.