Well folks, it's done. That's right. I proposed and I passed. Like my good friend/ colleague/ mentor/ major professor told me, "you have another marriage to prepare for now- your dissertation!"
I must add, in my uncensored fashion, "it was really no big deal". The actual defense that is, not the getting ready for it- now THAT was a big deal. However, once it was time to defend the proposal, the one I spent what felt like half of my life writing and planning, man was I ready. I nailed it and you will to!
Data collection already began. I have two more rounds to go, both of which are scheduled. I'm on track for my May 2013 graduate, just as planned. Man it feels good when things flow. But no celebration yet, I still have to do what I said I'd do in that "no big deal" proposal.
The real work has just begun and I LOVE real work. Really, I do. It beats out what I deemed meaningless/unauthentic coursework (which, unfortunately for me and those around me, is what my PhD program of study was often filled with) ANYDAY!!!!
Happy Monday y'all. I'm off to concurrent data analysis session 1- woohoo!!! (There's nothing like "real" data)!
Stayed tuned for updates on the trials and tribulations of my final days as PhD student- yikes!
Here I share my thoughts, laid out raw, as I discover new layers of being throughout my doctoral studies. Today I sit as a second, NO FOURTH, year doctoral student; a mother of two, NO THREE, wonderful little girls; a wife; a friend; a sister; a daughter; an advocate; and an individual agent. Where else do I sit? Come, discover with me.
8.10.12
TASH- Equity, Opportunity, and Inclusion for People with Disabilities
TASH is an organization that is near and dear to my heart. My professional and moral journey began with TASH, and it continues there as well. Often I am asked, "what is TASH" and I fumble for an answer because TASH is so much to so many people.
Well.... here you go:
Who We Are
Founded in 1975, TASH is a volunteer-driven,
cross-disability advocacy organization of self-advocates, families,
researchers, professionals, policy-makers, and others who work together to
formulate solutions to tough barriers. The inclusive practices we validate
through research lead to inclusive, more tolerant communities.
Our Mission
To promote
full inclusion and participation of children and adults with significant
disabilities in every aspect of their community, and to eliminate social
injustices that diminish human rights.
Vision
TASH
envisions communities in which no one is segregated and everyone belongs – no
matter what the perceived extent of disability might be. TASH recognizes that people with
disabilities want what everyone else wants – the dignity of work, the chance to
“give back”, and loving friends and family. We live this vision by advocating for:
Inclusive Education: evidence-based practices that
benefit all students, with and
without disabilities, and prepare them for adult living in a diverse and
complex world.
Community Living: cost-effective practices which make
it possible for people who need support to direct their own lives, live in
homes and with people they choose, and contribute as citizens.
Employment: real jobs for real wages, and a
chance to advance economically.
Elimination
of Disparities by Disability & Race:
improved quality of life for
all people with disabilities, regardless of race/ethnicity.
How We Act on Our Mission
TASH’s core competencies are embedded in:
·
An uncompromising
value framework that embraces a presumption of competence of all individuals
and guides everything we do.
·
Expertise in
evidence-based practices of integrated employment, inclusive education,
person-centered community supports, and transitioning students to adult living.
·
State-of-the-art
training opportunities for practitioners, employers, and families in the most
advanced strategies for supporting citizens with significant disabilities to
achieve optimal employment, socioeconomic outcomes, and community inclusion.
·
Unwavering
commitment to challenge inaccurate misperceptions about citizens with
significant disabilities and transform the “status-quo” through innovation and
outcomes-based strategies in workforce development, community inclusion and
public policy.
·
Widely respected
publications, including a scientific journal, a magazine for parents and practitioners, and excellent technical
assistance materials.
We Will
Realize Our Vision When –
All
individuals with disabilities enjoy a quality of life similar
to those available to all citizens. This means all people with
disabilities must:
· Be presumed to be competent
to direct their own lives;
· Have a way to communicate;
· Are fully included in their
neighborhood schools;
· Have protections against
abuse, neglect, and aversive procedures;
· Have the tools and
opportunities to advocate on their own behalf;
· Have a home, recreation,
learning, and employment opportunities based on the their personal vision of
quality of life;
· Have individualized
supports that accommodate their functional needs.
Equity, Opportunity, and Inclusion for People with Disabilities
ED NILES, Lincoln, Maine
Ed Niles was 35 years old when he began
telling people he wanted an “apartment building.” People at Ed’s support
agency, Katahdin Friends, Inc. (KFI), had been TASH members for a number of
years and were inspired by leaders in supported living to rethink how and where
people with developmental disabilities could live. Many of Ed’s friends were
moving out of foster care homes and into their own apartments with support from
KFI. Ed wanted this same opportunity, but apparently he wanted an entire
building!
Ed had lived
with his family until age 7 when he was sent to live at Pineland Training
Center, Maine’s former institution for people with intellectual disabilities.
Ed lived in foster homes for 17 years, but when Ed began working at the local
McDonald’s, which provided job supports, it was the beginning of new
expectations! Ed’s parents never thought he would be able to hold a competitive
job -- but he had, and they were so proud. They began to view Ed in a different
light. If he could do this, then maybe he could do other things…
In Fall 1997,
through Ed’s persistence and KFI’s gentle advocacy, his family finally agreed
to him renting a place with a roommate—better, but not ideal. Ed revealed the
effect of his restricted former foster life by standing at his bedroom door
until someone gave him “permission” to come into the rest of the house. It took
months for Ed to realize that this was his home and that he could go wherever
he wanted.
But once Ed
got comfortable, he was delighted in showing visitors every part of his home,
highlighting his appliances, yard, cellar and other interests. It was the first
time that this man in his 40s had possessed anything and controlled his life.
Ed continued
to demonstrate his desire to live alone. Following TASH’s values of honoring
personal choice, KFI rearranged its resources to support Ed’s desire to move
into his own apartment without a roommate. The contrast in Ed’s life is
remarkable. For 17 years, he was institutionalized. Once in his own apartment, Ed
began participating in his community as a worker, neighbor and friend.
Ed’s life
continues to blossom. He became a homeowner on December 20, 2005. He loves his
new house in Lincoln, Maine. Ed retired from McDonald’s after 15 years of
employment. He volunteers at a local food cupboard, attends music jams, plays
bingo and has been attending the same church for over 18 years. And he
developed a new connection—the gentleman who mows his lawn regularly stops in
to have coffee or a soda.
If you were to
ask Ed about his life today, he would say, “I am happy, I am the boss, and it
is my right.”
Equity, Opportunity, and Inclusion for People with Disabilities
TOBY BAZAN,
Canyon
County, California
When Toby Bazan was a child, he had
some issues at school and in the community. When he was 15 years old, he had a
run-in with the police and he ended up in a locked residential unit in
California’s Fairview State Hospital, where he lived for 13 years. Much of
Toby’s time was spent locked down in a unit, but sometimes he got to go outside
and walk around campus thanks to the hospital’s day program. He even had the
opportunity to have bonfires on the beach, which Toby looked forward to very
much.
Unfortunately,
Toby was still living in an institution. The pushy and controlling staff and
tight, crowded nature of the hospital made Toby very nervous. If Toby got
agitated, sometimes the staff would tie him down in 5-point restraints. Not
only does this increase the chances of a patient getting injured, but this also
made Toby much more anxious. One time, Toby was invited to speak at a function,
but once Fairview found out he was going to talk about the staff tieing him
down in 5-point restraints, the hospital would not allow him to go. Toby knew
that the hospital was being dishonest and it was wrong for them to try to hide
what was going on inside the facility.
A
particulary upsetting experience was the case of Van Ingraham. Van was a
patient at Fairview and a friend of Toby’s. Van died of a broken neck while
under the care of the staff at the hospital. The hospital said that Van fell
out of bed. The coronor’s report came to the conclusion that Van’s injuries
could not have been caused by a fall out of bed; Spinal experts say that the
injury was likely a homicide caused by a headlock.
Luckily
for Toby, he moved out of Fairview in 2007 and into his own apartment. Giving
Toby the freedom to live on his own allowed him the chance to figure out what
makes him comfortable on a day-to-day basis. Being independent isn’t all great.
Life has its ups and downs for everyone, Toby is no exception. But Toby seems
to be flourishing greatly.Toby now leads a fulfilling life. He has presented
his experiences at colleges and conferences around the country. He has a great
relatioship with his local politicians and service agencies.
During
the Holidays, Toby works as a Bell Ringer for The Salvation Army, and now he’s
working on turning his love of beautifying his community into a recycling
microbusiness.
Equity, Opportunity, and Inclusion for People with Disabilities
DANNY LEDERER, Louisville, Kentucky
Like most parents, Leslie Lederer did not expect to have a
child with a disability. Danny seemed fine at birth. Soon they noticed that he
wasn’t achieving the developmental milestones at a typical pace. At age 6
months, Danny was diagnosed with Infantile Spasms. Little did she know that
Danny would have significant intellectual and developmental disabilities.
Armed with a medical diagnosis, Danny’s parents began trying to
fix Danny through medication and therapy. Fortunately, one of the medications
stopped Danny’s seizures; it also resulted in the loss of most of the motor
skills Danny possessed at the time. Danny attended an early intervention
program with other kids who had complex disabilities. Over time, they noticed
that Danny was more interactive around other kids. One day, another mother said
that her son considered Danny his best friend.
When Danny was ready for kindergarten, the school wanted
to place him in “the severe and profound classroom.” Danny’s parents insisted
he enroll in a class comprised of kids with and without disabilities. About
that time, Leslie read a magazine from TASH, which highlighted how students
with severe disabilities like Danny’s were being integrated into schools.
Leslie attended the TASH Conference and started educating school staff about
what she had learned.
As a result of the TASH connection, Danny moved back to
his neighborhood school in fourth grade over the loud objections of the
principal. However, the law said Danny had the right, and people in the district
supported them. He was able to finish elementary school with his sister, cousin
and friends—old and new.
Danny continued on to middle school and then high school.
He went to proms, was on homecoming court and the newspaper staff, and
graduated with his class in 2002. The principals were welcoming and many of the
regular and special education teachers were great at figuring out how he could
work on his goals and participate in the general curriculum. From the
beginning, he was part of the school and larger community. He made friends, got
invited to parties, played Little League ball with the help of classmates. The
next step was for Danny to transition to the community. Using many of the
strategies learned at TASH, Danny did volunteer work and spent time in class
and working on a college campus.
Danny has never learned to hold his head up, reach and
grasp, feed himself or use a switch consistently despite the best efforts of his
support staff. What he has learned is to be part of the community, a place
where his health and well-being are immeasurably benefited. The family realized
early on that they were raising a future community member and to the best of everyone’s
abilities, and his, they have.
Equity, Opportunity, and Inclusion for People with Disabilities
Barb Trader, Executive Director
Become
a Member
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and Inquiries
1001 Connecticut Ave NW
Suite 235
Washington, DC 20036
Main Info Line:
202-540-9020
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