part two….traveling home

my son, zach, wears leg braces. the person in front of him has leaned all the way back. this kid has nowhere to put his legs. so who is to blame?  the person in front of him that has no idea he wears leg braces? the airline?  should zach say something to the woman in front of him? i am sure he doesn’t want his mother to fight his battles for him and that woman has every right to lean her chair all the way back.

my questions to you are… when should people with disabilities advocate for themselves and at what point should companies, such as an airline, take responsibility that there are people whose disability aren’t always visible.

should handicap seating be available on an airplane? as a consumer you can pay more for “comfort seating”. “comfort seats” are seats with more leg room. what if all those seats are taken at the time you purchased your ticket as is what happened to us. i ask these questions because i cannot believe or understand that in the year 2017, people with disabilities are still fighting to be recognized as consumers. buses, and trains and subways all have handicap seating. why does an airplane not offer handicap seating? i actually went and asked the flight attendant this question. he basically told me “there are no handicap specific seats” he mentioned the “comfort seats” as well as the “emergency exit seats”. he then remembered that it is against the law for a person with a handicap to sit in the “emergency exit” seats. so I’m guessing that unless you pay for a first class seat or a “comfort seat” you are (excuse my language) shit out of luck. he also asked me “what do i consider to be a handicap” and “why am i asking this question?”.  i was taken aback by this question. i have to explain to him what i consider to be a handicap? i must admit it made me a little angry to have to answer to him what i consider to be a handicap. is it fair to even ask that question? when you apply for a handicap sticker for your car, you must prove your handicap. i absolutely understand that. should people with disabilities have to carry around a badge or identification to prove they have a disability?

imagine this—you wear leg braces (which keep your feet at an 90 degree angle). you are on a plane and the person in front of you leans all the way back. now you cannot move your legs at all. you are sitting upright in a seat, knees bent at a 90 degree angle as well as your feet because of the leg braces. you have to sit like this for a minimum of 3 hours. how comfortable does that sound to you? try that without leg braces and let me know how you make out. as well as being uncomfortable think of how unsafe this is. how good do you think this is for your circulation? how many times have you heard of people getting blood clots in their legs because they don’t move enough on a plane? how safe is that for a person with a physical disability?

when will companies and manufacturers realize that 20% of our society has some sort of disability? that means 1 in 5 people have a disability. do they realize that they are missing out on a billion dollars of consumer spending a year? how have they not tapped into this market?

as i am writing this i am getting angrier and angrier. my son does have a handicap sticker for his car and do you know how many times he has been asked (by adults), “why are you parking in that spot?” “do you know that is a handicap spot?”. why should zach have to deal with this at all? when he wears long pants you cannot see that he wears leg braces. why should zach have to explain at all?

this is what zach deals with on a day to day basis. something has to change. we must advocate for our children everyday. we must fight discrimination when we see it. we must change the perception of people with disabilities. i cannot do this alone. i am just one mother. i need your help. copy and paste this blog and put it on your facebook page. pass it along and maybe one day soon we will see change begin to happen.

being different…..

zach is your  “typical” 17-year-old boy in every way except that he wears leg braces and does not have full function of his hands. lately things have begun to bother him about having charcot marie tooth. he can only drive his own car. it is adapted so that he controls the gas and breaks with his hands along with a few other tweaks. he asked me last week if he could move my car from the sidewalk to the driveway. i said no. my car is not adapted for him. he became very angry and frustrated with my answer. he has realized that as much as he can do anything, he cannot.

at an age where kids like to drive their parents “nice” car, he can’t. no big deal right? to him it is a big deal. i can tell him that he should be thankful that he can drive a car and that we are fortunate to be in a position to outfit his car for him. he doesn’t care. in his eyes he is different than other kids and will never be able to just get in a car and drive. he will always have to adapt things to make it work for him. why isn’t our society more aware of people with a different ability? why is it in 2016 we are still fighting to get paid as much as an able bodied person? why aren’t there more accessible entry ways? how about opening a can of soda? zach has to compensate for everything that people take for granted.  someone the other day asked me “how does he tie his sneakers”? i had to think about that for a second. he finds a way to do it.

in an age of self driving cars and phones where you can see someone on the other end, we are very antiquated with what is available to differently abled people. we have come a long way but we have so much farther to go. being a mother of a person with a physical disability, i also take things for granted. i don’t realize how hard it must be for zach to type on a computer or open a door. all door knobs are round. he cannot open his hand. wow, right?

20% of our country is made up of people with an intellectual or physical disability. thats a lot of people. i don’t want this post to come off as preachy. i just want to make people aware of this. I’m just a mom trying to make a better place for my kids. i have the means and ways to do this. many people don’t. making ones car adaptable to them should not cost a fortune, but it does. wearing legs braces should not cost someone 2 months salary. that is insane. i don’t want to hear about obamacare and health insurance. it is not about that. it is about quality of life.  yes quality of life. zach should not be frustrated because all shirts have buttons and he can’t button his shirt. make shirts that are adaptable to him.

i started this blog to try and make a difference for my child and other people like him. awareness brings about change. lets change the perception of people with disabilities.

#cmtmama #endcmt #charcotmarietooth #cmtausa.org

 

 

 

 

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!!!