is a long discourse on some of my experiences and the need for change.
The lack of educational access leads directly to a lack of
employment opportunities for survivors of Traumatic Brain Injury (TBI) as we are prevented from acquiring job skills. We are left with relying on Social Security
Disability Insurance (SSDI) to survive.
Due to advances in trauma care, people with TBI make up the fastest growing
segment of the disabled community. Disabled Student Programs and Services (DSPS - Cabrillo College, Aptos), Disabled Student
Services (DSS) and Disabled Resource Center (DRC Ė formerly DSS), both at UC Santa Cruz, are (and were) supposed to serve all
disabled students, however, that has not been my experience.
I am a TBI survivor who has encountered
the perception of the disabled as lazy, incompetent and lucky (to not have to work to survive, to get the best
parking places, to
have wide bathroom stalls, to have note-takers etc. I have done my best, but I do not know what to do anymore.
I have never met a disabled American content to collect the pittance that is SSDI, but I am sure they must exist. The rest of us,
however, want to be given the opportunity to be active members of society, to earn a living and be a part of a family.
- I did not choose to be a TBI survivor.
- I did not choose to speak slowly and hoarsely.
- I did not choose to need and be denied writing assistance.
- I did not choose to repeat classes.
- I did not choose my academic record.
- I did not choose my GPA.
- I did not choose social isolation.
- I did not choose to have few friends.
- I did not choose to have zero job skills.
- I did not choose poverty.
The last eight decisions, along with all the dropped classes, and even a failed one, were decisions DSS, DSPS and DRC made for me,
without my awareness or (obviously) my consent. My drive and intelligence mean frustration, social isolation, academic ruin and poverty if my
disability is not accommodated. My disability has never been accommodated.
These services seem designed to inhibit and prevent the attainment of educational goals for the TBI survivor. For
example; there is no feedback mechanism. How is it possible to improve service if the people being served are not asked for their
input? Three possibilities come to mind:
- Students who need writing assistance are not being adequately served and the student organization in question, DRC or DSPS, does
not want that fact brought to their, or the publicís, attention.
- Disabled students are incompetent and not capable of evaluating their treatment by DRC and DSPS.
- Services for disabled students are intended to give the appearance of equal education for disabled students, however actual
education is irrelevant and a waste of time, so feedback is unnecessary and unwelcome.
While, the manner in which I became disabled is unusual (I fell 140 feet rock-climbing on July 16, 1983) my
experience, since then, is not unique.
My friend told me in 1989 I was the smartest person she had ever known. Carrie was unaware of the emotional
effects DSSí lack of accommodation was having on me, as was I.
I include these two examples to illustrate that lack of accommodation for my disability has immediate consequences
for me and it has not changed in spite of the passage of the Americans with Disabilities Act (ADA).
Calculus and Chemistry
- In fall 2004, 15 years after I graduated from UC Santa Cruz, I solved a Calculus problem
(at Cabrillo College) using trigonometric
substitution when the instructor didnít think it could be done using any method other then
partial fractions. I was able to do that because a friend did all the writing (on a whiteboard) while
I did all the thinking and told him what to write. I know, for a fact, if I had had to workout that
problem on my own, I could not achieved the result I did, because writing is so difficult for me.
Calculus skills are essential for the Chemistry 163 series at UC Santa Cruz.
- In fall 2007 I scored 79 on the Chemistry 163A midterm (quantum theory at UC Santa Cruz)
while the class average was 59. I would have scored an 87, but did not have assistance
in preparing my equation sheet (DRC never offered to help me with my writing, though they knew
I needed help) and so, did not write down the formula for the angular momentum of a particle because
the act of writing was so difficult for me. As a result, I lost eight points on the first problem,
because I needed that formula, but did not have it. If DRC was truly interested in helping
me with my education, they would have supplied me with writing assistance. However, they were not
interested in doing their job.
Denial of Service
I was denied accommodation for my disability, at UC Santa Cruz, in Fall 1984 through Spring 1989,
and in Winter and Spring of 1990;
at Cabrillo college in 1991, and Spring 1995 through Spring 2007; and again at UC Santa Cruz for Fall 2007, and Winter
and Spring 2008.
There seems to be a concerted effort to deny, people disabled from TBI, access to quality
education. For example:
- When I first got disabled in 1983, I was writing at 1/6 the speed of what I was writing
before my accident. This meant that a homework assignment that was expected to take 15
hours, would take me 90 hours. My homework assignments were always incomplete, poorly
composed and hard to read. I needed writing assistance.
- In the Fall of 1984, I specifically asked DSS at UC Santa Cruz for writing assistance,
the head of DSS attacked me, saying I was ungrateful, a malcontent and so on. As a result
I dropped Endocrinology, my only class, in Fall 1984. She told me that all DSS would do,
is supply me with note-takers, homework was my problem. She suggested I tape the lectures.
- Instructors would pass me, though I had not learned the material. I told them about my
writing speed and how it was causing problems with the homework. At their office hours, they
would get to know me and could see how hard I was working and how desparate I was to pass.
From her refusal for help with the homework, I take it lecture is all that matters for academic success. I differ
with her assessment.
Lecture ties together disparate concepts brought up in the homework, describes strategies to solve particular
homework problems and covers
aspects of the homework the instructor feels are important.
For most people school is a time of increasing socialization and new friendships. For me it was a time of increasing
loneliness and an ever-decreasing social circle. My friends would get together to socialize; prepare dinners, go to movies
or parties. I was by myself; desperately working on my homework, trying to keep my writing legible and concise,
knowing the entire
time of how pathetic my efforts were and that my friends were off doing something else and enjoying themselves.
I was doing the
best I could, I did not know what else to do. I learned to hate and despise myself for not being able to complete
simple assignments, write
legibly or speak clearly.
Emotional Consequences of Denial-of-Sevice
After 24 years of college and university study:
- I have few friends.
I thought I would meet people at school. I did not have time to hangout and socialize with anybody I met, because
I was always
working on my homework. I did not know what else I could do. When I spoke up about my treatment, I was attacked. I tried my best
for more than two
decades. The loneliness these policies have given to me can not be described.
- My personel life is a shambles:
This was not a random occurence.
This happened to me because of nationwide policies
implemented by UC Santa Cruz and Cabrillo College.
If it werenít for SSDI, I could not survive. I cannot get a job, but SSDI does not come close to meeting my living expenses.
I get the impression disability is assumed to be temporary, but TBI is permanent. Partial recovery from TBI is the only
possibility. I have never heard of a full recovery from TBI - ever. Any health care professional can verify my observations.
Instructors at UC Santa Cruz and Cabrillo College passed me, with grade ĎCí, because they could see how hard I was working, but,
often I was not able to learn the material the first time I took the course. I was focusing on writing the homework and
never, as in, not once,
had time to study for the midterms or finals. My GPA suffered as a direct result. Rather than earning ĎAís (of which I was
capable), I got ĎBís, ĎCís, the
occasional ĎDí and even failed a class.
I assume most of the ADA is followed by DRC and DSPS, but I know, they find ways to interpret portions, that involve accommodations, so that
TBI survivors (like me) are denied accommodation. The result
is a mediocre education, in spite of the disabled studentís drive and intelligence.
TBI survivors have much to offer academically, but need assistance in school. I have no doubts, if my disability had been accommodated,
I would be married, be part of a family and have usable job skills.