People have forgotten or Don't Know....

I was born with a rare bone disease called Osteogenesis Imperfecta (http://www.oif.org.com) which lead to me having many broken bones over my life... I recently talking with my mother when I was a baby/toddler I had many n many breaks n multiple breaks at the same times... When I was a small kid to my pre-teen yeas While growing up I had much pain from the breaks... I had fewer breaks but still a break once or twice a year and when I entered High School I started using a wheelchair more to guard myself from tripping/falling in school... I had many broken fingers in High School from my finger getting got in the spokes of my wheelchair's wheels... I fixed those broken fingers myself by pulling finger to correct it then used a plastic knife and tape to make a split saving me time waiting at a hospital ER to be seen/x-ray/etc... and saving money of the cost of going to a hospital too... :-D

But to my main point...

Growing up disabled I noticed a lot of people treated me as not an equal... Many times at restaurants the waitress would talk over me and ask the people with me what would he like to have, I would speak up and say "Hey I'm right here!!! Ask Me!!! not them..." they would act so surprised... 

Also accessibility wasn't like it is today... Curb cuts/ramps, Ramps period were no where to be found except for loading docks... Buses didn't have ANY type of equal access at all,... No automatic doors... All Buildings/Apartments/Houses had steps that had to have my wheelchair pulled up-n-over or me taken out of while I crawled up the stairs and some one had to carry my wheelchair up the stairs for me then I then got back into chair then again going back down... Handicapped/Disabled access was not there when I was younger!!! Heck when I was little the term for people like me was 'CRIPPLE' and changed to 'Handicapped' and than to 'Disabled' and again to 'Physically Challenged'... I hate the word 'Cripple' I did hear (rarely) it as a kid but I mainly heard the term 'Handicapped' as a kid... Te term 'Handicapped' was ok to me and then the term 'Disabled' was acceptable to me... The newer terms are what ever to me... The only term I get outraged at is 'Crippled'

Now a days access is not as much of an issue(wish there were more sidewalks and with curbs cuts/ramps) buildings have auto-doors, ramps, etc... but that wasn't always there...

Yes being disabled now-a-days is easier and not as much of an issue as it was... Being disable is not something to be looked up to, how a disabled person deals with their disability is what to be proud of(well if they turn their neg to a positive)... If I had a choice of being or not-being disabled, I'd Pick to NOT being Disabled!!! Yes I have had Many Many positives, good experiences being disabled but would trade it for never being disabled in a flash... 

Disabled people I think turn on blinders now-a-days to things that they can't do/enjoy that others can... or they try to find a work around... (ex: ramps, lifts, being lifted into/onto things, etc...)

I would have love to been able to enjoy a Jungle Gym, a friends Tree House(not an adapted one with ramps/lifts) but being able to climb up the tree and hang from a branch, go swimming at a swimming hole in the woods with friends and dive into the water...

Basically I would have loved being able to do the same thing as others did with-out the need of adaptive equipment or assistance!!! It is Great people invented adaptive equipment (I'm So Thankful They Did Thanks You All that did that!!!) and I'm so Thanks to those that have/are assisting me n others(They Are Blessed for doing So!!) But I wish there was no need adaptive equipment... I wish(a pipe dream) there was a cure for ALL disabilities like maybe downloading brains into a new body :-D 

Oh Well, I guess I want people to remember it wasn't(still is great) like it is now... Being disabled just 40/30 years ago was hard... and Hey pre-60's I researched a lot of disabled where put into institutions and were mistreated and died in misery... So A Lot has Changed thankfully and will hopefully get even better in time but again Being Disabled is Not something to look up to but, is something to build on and improve on...

Submitted Giovano Fusco Jr.  1-31-2012

 

NEW!!! My Life of Challenges!!!

I was born with a brittle bones disorder called OI (Osteogenesis Imperfecta), I have had over 60 broken bones in my life, and mainly as a kid I had many compressed vertebras. I was 5'2" tall but because of the compressed vertebras I'm now 4'11". Well mainly because of the broken bones an a few other factors I gained a lot weight over the years.

I went to a school for the disabled and because of their lack of teaching I developed a learning disability, thankfully my mother removed from that school and entered me into public school (1981) and there I learned read, write, and etc... I finished High School, my last semester I made the honor roll. I have tried to do college but the learning disability interfered that and has left me with a student loan which I can’t repay on SSI (the creditors don’t want to listen to my problems, I have been disabled all my life, they don’t care).

In my late teenage years I developed hearing problems, I had my left ear operated on but basically lost 85% of hearing in left ear; my right ear also has about 40% of loss.

In 1992, I helping take care of my dying father; when I got electrocuted. When I got electrocuted it made my left shoulder muscle crush my left shoulder ball. I had to have my shoulder ball replaced, after leaving the hospital I broke my leg at a store. My father died in Oct. 1993.

In 1994 I broke my right leg and had to have a metal brace inserted into right leg just under the knee. Weight skyrocketed to over 350lbs.

In 2001 I finally got a Doctor that worked with me. The Doctor recommended Bariatric Surgery. In Dec 2001 I have the Bariatric Surgery, by mid 2002 I went from over 350lbs to 205lbs.

Then in 12/2007 I got hit buy a car while I was crossing the street in my wheelchair, which broke my left hip. I had to have a metal rod inserted to hold it together.

In 4/2008 I had a stroke. The doctors’ thought I would die it was a very bad stroke they were trying to get my mother ready to deal with my death, but I think God wasn't ready for me yet :-) and I stayed alive. I lost total use of my right side but help from the rehab hospital (I was able to leave hospital after a month) and Bayside (a rehab clinic in Portland, ME) I have regained some use of my right side but can-not walk or stand and I lost fine motor control so lost my writing hand ability ...

In Jan 2009 I moved me, my mother and a friend of ours to Bradenton, Florida I couldn't deal with snow ever again now that I'm stuck in a wheelchair.

In mid 2010 Florida Medicaid/Amerigroup approved the purchase of a power wheelchair… in /October 2011 the  batteries were replaced because they were mot holding a good charge… in the 1week of December 2011 the charger for the chair started acting up & not doing a complete charge I called to report this and to request it to be repaired… Dec 24 the charger stopped charging all together…  and Amerigroup/Florida-Medicaid is refusing to repair it saying it  should last 5years… Yes the Chair should last 5years but parts for need to be replaced when they fail… Just like in your car if the tire blows will the manufacture fix that NO you have to… So go the same for parts on a wheelchair they also need replacing/repair!!! Wheelchair companies DoNot give 5 year warranties on wheelchairs!!! And Disabled (wheelchair bound) have A Legal Right to be able to have access to the world/state/city !!!
I NEED my Chair REPAIR NOW!!!

Submitted by Giovano C. Fusco Jr.
To be also shared on my blog: http://koalagiovano.blogspot.com
& on FaceBook: http://www.facebook.com/giovano.koala
and contacting local TV News & ADA...

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Status on my wheelchair's repair...

My Wheelchair's repair is still up in the air... Florida Medicaid is Taking FOREVER to approve the repair they aren't calling back or  informing anyone whats going with the repair approval... WTF I think I need a Lawyer to assist me ASAP!!!

 

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