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TAKING CHARGE OF SPECIAL NEEDS: RECENT COLLEGE GRAD SHARES WISDOM OF EXPERIENCE
July 16, 2000
EDITOR'S NOTE: Special Education News is pleased to present the insightful commentary of guest columnist Jill Allen. A recent graduate of Hamilton College in New York, Allen shares her experience making the transition from high school to college life as a determined student with disabilities. She graduated from Hamilton in May with a degree in English Literature and is pursuing a career as a disability awareness activist. Special Education News looks forward to bringing you more from this gifted young writer in future issues.
Nothing As I Expected
As I reflect on my college years now that I've graduated, I realize the
old saying is true: Most of my learning took place outside academe. While
what I learned in the classroom was worthwhile, the life skills I acquired
at school were also important.
Let me introduce myself. My name is Jill Allen. I have cerebral palsy, so
I use an electric
wheelchair. Because of my disability, I require help from personal care
assistants to toilet, bathe, dress and get in and out of my chair. This
article reflects my own experience, so some of my suggestions below may not
apply to other students.
Before I started college, I had a vision of my ideal personal assistance
situation. Five or six female students would volunteer to help me. Strong
enough to lift me by themselves, each could lift me four times a day if need
be. Of course, I knew I had to work with a home health agency while I
recruited enough PCAs.
But nothing went as I expected. By the end of freshman orientation, I
turned from an excited student into a weepy mess as the aides from the
agency consistently showed up late or not at all. The situation worsened,
despite my family's phone calls to the organization. Untrained aides came. I
lived in fear that the aides wouldn't show up.
Amidst all the turmoil, I somehow found time to plant the seeds of my
personal care network. Following are my suggestions for those who need PCAs while at college.
- If the agency you're using is unsatisfactory, complain! If this doesn't
work, switch to another service, or transfer to a different school. Don't
let yourself suffer!
- You may start out with an agency, but ultimately, try to recruit student
or community help. Having student help let me have control over my care,
integrated me into the college community, and gave me many friend-making
opportunities. Don't neglect recruiting locals from town.
- Recruit in a personal manner. I found that when I put up signs around
campus asking for help with "attendant care" no one responded. However, when
I spoke in front of student organizations telling them that I was looking
for people to help me dress and bathe, there were always one or two people
willing to help. Procuring PCAs in a direct manner requires candor and
assertiveness, but people are more willing to help if you put a personal
spin on your needs.
- State your needs to campus groups such as volunteer organizations, peer
educators, emergency medical technicians, Greek societies, etc. Ask current
PCAs if they have interested friends. Put flyers in student mailboxes.
Always be looking for new helpers, because current ones graduate, go abroad
or get hurt.
- Be prepared to compromise your original plan. When I assembled my first
group of PCAs, my helpers did not fit my original vision. There were 30
women and men of different sizes, races, nationalities, social classes and
sexual orientations. I quickly discovered that college students were too
busy to help me for more than an hour and a half per week. Consequently, I
scheduled each person for a certain slot on a certain day (i.e., Tuesdays
from 5 to 6 p.m.). I also realized that not all of them could lift me by
themselves, so I found partners for those who needed them. Be willing to
have helpers from different backgrounds, so that your applicant pool remains
as big as possible.
- If you obtain PCAs for yourself, YOU are the one responsible for your
care. This means that not only must you recruit helpers, but you also must
schedule, train, hire and fire them. Most of my PCAs volunteered. However, if your helpers do want money,
you'll have to negotiate wages. I trained new PCAs by having them watch one
of my experienced helpers and then having them attempt to lift me. If
orchestrating your care is overwhelming, get help.
- Room with PCAs. If you ever need help between scheduled times, he or she may
be there. Additionally, your roommate can help you exit the building during
fire drills.
- Communicate openly with PCAs. Establish a discussion-based rapport, so
that if conflicts arise, you can talk them out. State your needs clearly,
directly and politely, while being sensitive to your helpers' feelings. If
you show concern and patience for them, they will be more eager to help you.
In closing, I'd like to say that if this article makes just one student's
college life better, I'll be happy.
Write to Jill Allen at allenjillm@hotmail.com.8
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