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N Ovember
N Ovember
N Ovember
NNewsletter
ovember 2017
Ed i t or ?s N ot e Fr om Th e H ear t
Dear fr ien ds, M eet m y l ost an d fou n d fr ien d, Yash asv i n i Rajesh w ar ,
Th an k you for you r H ead of M edia an d Com m u n ication of Ad v en t u r es Bey on d
appr eciation s for th e l ast m on th ?s Bar r i er s Fou n d at i on expl ain in g abou t a pion eer in g effor t.
edition . It was special as I design ed Tel l u s abou t t h i s u n i qu e t h ou gh t an d i t s gen esi s
an d edited it sittin g in USA wh er e I
Adven tu r es Beyon d Bar r ier s Fou n dation (ABBF) is r ooted in
was h ol idayin g. Big th u m bs u p to th e
th e u n waver in g bel ief th at pl ay can ch an ge th e wor l d. By
tech n ol ogy for con n ectin g th e wor l d
ask in g peopl e to com e an d exper ien ce in cl u sive adven tu r e
an d m ak in g it a big fam il y!
togeth er ,we ar e h opin g to cr eate oppor tu n ities to h ave
A m on th l on g fr eedom to r oam con ver sation s, bu il d r el ation sh ips, an d get to k n ow each
abou t ever ywh er e fr om gr ocer ies to oth er. On ce in dividu al con n ection s ar e bu il t, we bel ieve, th e
k n ick k n ack s (th an k s to accessibl e n eed for accessibil ity wil l au tom atical l y fol l ow an d in cl u sion
r oads an d pavem en ts) tu r n edm e wil l becom e a state of m in d, or gan ical l y an d n atu r al l y. At
l iter al l y in to a sh opah ol ic! Th e ABBF,we bel ieve th at you cl im b a m ou n tain as str an ger s bu t
feel in g of soar in g h igh , sk y bein g th e com e down as fr ien ds, an d we h ave seen th is com e tr u e tim e
l im it was exper ien ced at th e an d again .
com pl etel y accessibl e Gl acier poin t
Th e seed of th ou gh t beh in d
at Yosem ite Nation al Par k at an
ABBF was bor n fr om ou r
el evation of 7200 ft with fr eezin g
fou n der ,Divyan sh u Gan atr a.
tem per atu r e. I was stu n n ed n ot ju st
W h en h e wen t bl in d at th e
by th e pictu r esqu e an d tr an qu il
age of 19, h e r eal ised th at
sigh tsof H igh Sier r abu twith th e
spaces of l eisu r e,
h u m an for esigh t .Stan din g th er e u p
en ter tain m en t, an d spor t ar e
on th e r am p seein g an d feel in g ju st
n ot accessibl e to Per son s
l ik e ever ybody el se, r eiter ated th e
with Disabil ity at al l . Bein g
im por tan ce of equ ity an d equ al ity.
an adven tu r e-l over h im sel f, h e decided to cr eate th e spaces
M an y qu estion s h e cou l dn ?t fin d for h im sel f, an d in vited oth er s to
r ise in m y h ead as I fl y back h om e exper ien ce th e adr en al in e al on g with h im .
fr om th is l ovel y sojou r n an d h ope to
sol ve a few with al l you r su ppor t. Over th e year s, Divyan sh u becam e In dia?s fir st bl in d sol o
par agl idin g pil ot an d th e fir st bl in d cycl ist to pedal fr om
Regar ds M an al i to Kh ar du n g La (a total of 550 k m s to ar gu abl y th e
Bh avn a Botta wor l d?s h igh est m otor abl e r oad) on a tan dem cycl e. As an
or gan ization , ABBF h as im pacted cl ose to 4000 Per son s with
Disabil ity an d over 1.5 l ak h abl e-bodied peopl e sin ce
in ception in 2014.
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ph ysical con dition s star ted wor sen in g with age in stitu tion . It was a dr eam th at cam e tr u e for
an d l ack of pr oper tr eatm en t, both u pper an d m e, m y par en ts an d al l m y fr ien ds an d r el atives
l ower l im b m u scl es wer e gettin g ver y tigh t an d wh o h ad con stan tl y en cou r aged an d su ppor ted
m y m ovem en t becam e ver y r estr icted an d h ad m e.. Al l th e 18 year s of h ar d wor k , h ope,
to u n der go su r ger y at th e age of 7 fol l owed by difficu l ties su ffer ed an d sacr ifice h ad paid off.
in ten sive ph ysioth er apy. Th e n ext ph ase of l ife star ted wh en I
Th e tu r n in g poin t was in 1994, I got a r each ed M ysor e to join th e in stitu te in 2005.
good an d wel l tr ain ed ph ysioth er apist, Dr. Um a After r each in g th er e, I r eal ized th at it is n ot
sh ah , I star ted to stan d an d wal k a l ittl e. In -fact, easy for to m an age with ou t wh eel ch air an d a
it was on l y after 15 year s of su r ger y an d th er apy car egiver. Th e n ext six year s, l ivin g in a n ew
in cl u din g on e in M u m bai in 2001, I star ted pl ace tau gh t m e m an y th in gs an d em power ed
wal k in g with a wal k er ,star ted cl im bin g stair s m e in m an y ways.
al on e. Can y ou sh ar e w i t h u s som e of t h e m ost
As a con sequ en ce of su r ger ies an d sat i sf y i n g m om en t s?
ph ysioth er apies dem an din g m or e tim e, I h ad to
I pu sh ed m y fath er to star t a sch ool for ch il dr en
su ffice with h om e tu ition s in itial l y. Bu t th en , as
with in tel l ectu al disabil ities. Th is was a ver y
tim e m oved on , I star ted atten din g th e Rose
satisfyin g m om en t. Per son al l y I al so offer ed
m atr icu l ation sch ool in M adu r ai. Adm ission
vol u n tar y speech th er apy pr ogr am s to wh oever
in to th e sch ool for th e l ast 4 m on th s of h er 10th
n eeds th em at th e in stitu te of Dr. Um a Sh ah
stan dar d after a l ot of n egotiation s bu t I cam e
du r in g vacation s.
ou t with fl yin g col or s.
Th is fu el l ed m y desir e to stu dy
h igh er. M y par en ts str u ggl ed a l ot in h u n tin g
down sch ool s for m e. Bu t th en , n ot m an y wer e
wil l in g to tak e. In fact m an y l ook ed u pon m y
disabil ity as a m ajor disqu al ification poin t.
Fin al l y,M ah ar ish i Vidya M an dir ,M adu r ai wen t
on to accept m e even after k n owin g th e
difficu l ties.
Al l th is m ade m e even m or e
focu sed an d I etch ed a car eer am bition in m y
m in d- a car eer wh ich wou l d h el p peopl e with
disabil ity an d cr eate awar en ess am on g peopl e
r egar din g th e sam e. So, I wen t on to wr ite th e
en tr an ce exam for adm ission in to th e Al l In dia
In stitu te of Speech an d H ear in g. I got th r ou gh
th e en tr an ce an d wen t on to becom e th e fir st
stu den t with cer ebr al pal sy to stu dy in th at 1 5
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ovember 2017
It was wh en we visited ou r pediatr ician , Til l th e 4th Std, Ru ch a wen t to a r egu l ar sch ool .
th at a sl igh t an xiety over cast ou r joy. Th e doctor Bu t th e ear l y h ou r s of sch ool an d in cr easin g
r ecom m en ded th at we do bl ood test for h er ? cl asswor k , began to bu r den h er. Un abl e to cope,
th e Tr isom y 21 Down Syn dr om e Test. At th at we pu t h er in a sch ool for special k ids. At h er
tim e, we did n ot k n ow an yth in g abou t Down n ew sch ool , sh e was th e br igh test am on g h er
Syn dr om e. Th e doctor too did n ot tel l u s m u ch . cl assm ates. Sh e was th e on l y on e wh o cou l d
An yway,we got th e test don e an d it tu r n ed ou t r ead an d wr ite. Th e cl ass coor din ator
to be positive. W h en we wen t back to th e r ecom m en ded th at Ru ch a be sh ifted to a
doctor ,al l th at we wer e tol d was th at h er r egu l ar sch ool . W h en we adm itted h er to a n ew
ph ysical devel opm en t wou l d be sl ower th an sch ool , sh e h ad to join two cl asses ju n ior to h er ,
oth er ch il dr en an d to k eep a cl ose watch on h er as h er En gl ish an d M ath s wer e weak .
pr ogr ess. Sin ce Down Syn dr om e did n ot m ak e In 2011, Ru ch a m an aged to
m u ch sen se to u s th ose days, we th ou gh t we com pl ete h er 10th Std an d secu r ed 58%. Sh e
cou l d som eh ow su r m ou n t devel opm en tal an d was th e fir st ch il d with Down Syn dr om e in
gr owth issu es. M ah ar ash tr a to h ave su ccessfu l l y com pl eted
By th e secon d year ,we began to h er sch ool . Ru ch a wan ted to stu dy fu r th er. W e
r eal ize th at Ru ch a?s r espon se to activities was as h er par en ts su ppor ted h er en th u siastical l y.
m u ch sl ower th an oth er ch il dr en . H er gr owth Sh e en r ol l ed for San sk r it m ajor for gr adu ation .
al so seem ed del ayed. Sh e l ook ed sm al l for h er As h er col l ege was far fr om h om e an d r equ ir ed
age. Fin al l y,we took h er to a ch il d special ist. a tr ain jou r n ey,h er m oth er too en r ol l ed h er sel f
Sh e h ad on e l ook at Ru ch a?s face, an d decl ar ed in th e sam e col l ege for post-gr adu ation cou r se,
th at sh e h ad Down Syn dr om e. Sh e tol d u s so th at sh e cou l d accom pan y Ru ch a to col l ege.
Ru ch a wou l d n ot be ver y good at stu dies an d For two year s, both m oth er an d dau gh ter
n ot to h ave an y expectation s fr om h er. ?Tr y an d atten ded col l ege togeth er.
adm it h er in a sch ool for special k ids,? sh e
added.
W e wer e stil l gr appl in g with
Ru ch a?s con dition an d h ad n ot fu l l y u n der stood
th e pr obl em . W e th ou gh t we cou l d battl e it ou t
an d br in g h er on tr ack with oth er ch il dr en . As
sh e gr ew, we got h er a ph ysioth er apist an d
speech th er apist to set h er devel opm en tal
r ecor ds str aigh t. H er l egs an d h an ds wer e weak
an d h er speech was u n cl ear. Bu t we n oticed
th at sh e l ik ed book s. So we star ted gettin g h er
pl en ty of stor y an d pictu r e book s. Sh e cou l d sit
with h er book s for h ou r s, fl ippin g th r ou gh th e
pages, star in g at pictu r es. Sh e wou l d al so watch
tel evision avidl y. 1 7
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ovember 2017
4. Sesam e Ph on e
Sesam e Ph on e is a com pl etel y
h an ds-fr eesm ar tph on eph on e m ade for peopl e with
l im ited m ovem en t (l ik e par al ysis or spin al cor d Sen d in you r su ggestion s to
in ju r y). It is actu al l y a m odified ver sion of Googl e?s botta.bh avn a@ gm ail .com
Nexu s 5 device th at tr ack s th e u ser ?s h ead an d For sh ar in g an d su bscr iption s l og on to
al l ows fu l l con tr ol of th e ph on e ju st with th e h ead.
in fo.con n ectspecial .com
5. L i f t w ar e
Th is is an eatin g u ten sil th at al l ows peopl e with
m otion disor der s (l ik e Par k in son ?s disease) to eat
th eir food with ou t an y h el p.Liftwar e is actu al l y a
stabil izin g h an dl e you can attach a eatin g u ten sil to,
in cl u din g a for k , spoon an d sou p spoon . Th e h an dl e is
capabl e of r edu cin g h an d tr em or s 70%, m ak in g it
good en ou gh for m oder ate tr em or s.
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