pity and I’m sorry…..

yes my son has charcot marie tooth disease. yes he was born with it. yes he has to wear leg braces and no i don’t want your pity.

the definition of pity is “a strong feeling of sadness or sympathy for someone, and/or something that causes sadness or disappointment”.

i am neither sad nor disappointed about zach and his having CMT. from the day he was diagnosed with this disease i promised myself i would not feel sorry or pity zach or myself. nothing i could have done would have changed the outcome of his being born with CMT. CMT is usually hereditary. in zach’s case it was a spontaneous mutation. gosh that sounds alien like lol. but thats what happened. my dormant CMT gene and my husbands dormant CMT gene produced a child with CMT. its a little bit more complicated than that, but in a nutshell, thats what happened.

sometimes when i tell someone that my son has a neuromuscular disease and has to wear leg braces, they say “I’m so sorry”. what are you sorry for?  are you sorry that he was not born “perfect”? are you sorry that he has to grow up that way? what exactly are you sorry for?

why does society feel  the need to say “I’m sorry”? do i say I’m sorry if your child has blue eyes? do i say I’m sorry if your child has huge feet?  why does society get so tongue tied when they encounter someone who has a disability? as far as I’m concerned, being different is what makes the world go around. having a “disability” just means zach does things a little differently than others. he drives a car. instead of using his feet, he uses hand controls. zachs uses a computer. but instead of using his fingers he uses his knuckles. he compensates and finds what works for him. i have seen people that use their feet to paint because they have no arms. i have seen people run with no legs. just think how amazing that is!!!

 

unfortunately it is a majority of the “able-bodied” community that insists that having a disability is a terrible thing. don’t think of a disability as being a burden or a sad. i feel that its the feeling of pity and sadness that needs to change. don’t pity zach because he needs help doing things or does things differently. would you pity someone that asks for help getting something off a tall shelf? would you pity someone because they ask for help carrying in groceries?  do you pity me because i am left handed and its primarily a right handed world? being left handed has forced me to do things differently than a right handed person. think about when we were in school. most of the desks were made for righties? you know what I’m talking about!! the table where you slide in to the right and as a lefty you must contort your body around so you can write on the desk!!

i guess what i am trying to say is, instead of pitying zach and my family, look to the positive in our lives, and oh we have so many!!! for example: i don’t need to wake up at 630am anymore to drive zach to school. he drives himself!!!

 

disability and politics…..

i am not here to endorse anyone. as election day is getting closer, we all need to think about this very seriously. who is going to run our country for the next four years? who is going to help the disability community in a positive way. 1 in 5 americans represent the disability community and rarely has a presidential nominee ever addressed them.

almost 60% of adults with disabilities are not in the workforce. they get paid below minimum wage and the stigma of having a disability is viewed negatively. how do these candidates plan on changing this?

again, i am not here to endorse anyone but in a rare move hillary clinton has bought up the subject of how she is going to address some of these issues. from what i have seen, donald trump, made a disgusting attempt at making fun of a disabled journalist. he has not addressed this issue on his website at all.

being a mom and having a child with a disability, this topic is very important to me and my family. we need to change the way this nation looks at and judges people with disabilities. I’m sure that i am not alone with my frustration. we should do our research and really think about who we want to lead our country for the next 4 years.

i want to make it perfectly clear, i am NOT endorsing one candidate over another. i am saying…do your research and make an educated decision. i am “just” a mom trying to make the world a better place for my children!!!!