I was born deaf, blind with Cerebral Palsy (CP). Notice I did not capitalize the d in “deaf” or the b in “blind” –this is because I did not meet my Deaf and Blind self until later in my life. Cerebral Palsy was always at the center of my childhood. My parents made sure I had accommodations in place for my mobility needs.
I attended an elementary school for students with special needs from pre-k to 5th grade, then transitions started. These transitions brought about many triumphs, yet also many trials. These experiences have led me to be the confident DeafBlind adult with CP I am today.
I grew up Catholic, so it was always my parents’ desire for me to also be educated in the Catholic faith. The Catholic Church that my family attended had a school, but the school was not accessible. It had two floors and no elevator; there was concern that the stairs was a safety risk for me. I recall my mother sitting me down in second grade and explaining to me this goal of one day transitioning to Catholic school. She told me that my teachers were aware and that they were supportive.
Just to give an idea of what the logistics of elementary school looked like for me: Students were compartmentalized into classes to meet the needs of their disabilities. My class was made up of students with physical disabilities, students in wheelchairs and walkers or other mobility aids. Most of the students in my class also had additional needs. The class size was small and there was a lot of repetition and variation in instruction to meet all of our needs as stated in our Individual Education Plan (IEP.) Within the classroom, we were also grouped into our academic abilities, I was in the highest group, even within those groups I was learning far below grade level. Catholic school was still the goal.
Sixth grade was one of the first years of transition that I recall. My mother finally found a school that was safe and able to meet my mobility needs. It was a Catholic school, all on one floor. I faced new challenges at the new school; unlike my elementary school I was the only student in my class as well as the whole school with special needs. The class size was still small, yet there were noticeable differences. Everyone was being taught on the same grade level, I was the only student being pulled out of the classroom for support services. My peers at the Catholic school could already read and write cursive and multiply and divide double digits. I was just being introduced to cursive and multiplying and dividing at the end of fifth grade.In my old school all of us were pulled out for at least one support service (Physical Therapy, Occupational Therapy, Social Work etc.)
Realizing that I was behind my peers at the Catholic school affected my behavior. Since I couldn’t fit in academically, I was determined to make friends. I knew I was different, so to combat this, I became the class clown. I made my classmates laugh–and they liked me.
Something else I noticed and became very aware of is that when I did pay attention in class, I struggled to understand my teacher and classmates–not the content, but hearing the instructions given. Sometimes they weren’t clear and sometimes I couldn’t access them at all. This also contributed to my behavior, it manifested itself in frustration. My teacher would reprimand me for “talking” in class when what I was doing was asking my neighbor what instructions the teacher had given. My parents, teachers, and the IEP team decided that I was not mature enough for sixth grade in all aspects. They talked of placing me back in 5th grade at the Catholic school. I begged and pleaded with my parents not to do this.
All of the supports I mentioned had followed me from the Special Needs School to the Catholic school. As a last resort, Teacher Consultant Services were added. I was pulled out of class and either pre-taught lessons or given reinforcement for the specific academic skills I struggled with. This support service made a big difference. It allowed me the time I needed to catch up. It also made up for what I missed through auditory means.
By the time I graduated from eighth grade not only was I on grade level, I graduated as valedictorian of my class.
Ninth grade was another pivotal year for me. I started a new school as a freshman in high school. This was also a small Catholic high school where I was the only person with disabilities. Unlike middle school, support services did not follow me to high school. In middle school, I told my mom that I didn’t want OT or PT anymore. I told her I wanted to be on the basketball team like my schoolmates. The IEP team met and decided that basketball would indeed substitute OT and PT. Basketball is what followed me to high school. I got hurt in gym class and was not able to make tryouts.
In high school, I was bullied. This was the first time I had experienced being bullied because I was different.
There was a group of students in my class that bullied me daily, to the point where I contemplated suicide. I wrote a suicide note and my mom found it– which triggered a domino effect. My whole class had to have a weekly class on harassment and I had to meet with my bullies to come up with a school harassment policy. This felt like more of a punishment than a support.
Despite all of this, I did well academically and in my sophomore year I was able to join the basketball team. The bullying was still there, but less. I managed to graduate again as one of the top students of my class.
If you’ve read this far, you’re probably wondering what any of this has to do with being DeafBlind?
Even though I didn’t go to a Deaf school, I think the logistics of my education explained this far is what kept me afloat. What I failed to mention is that I was exposed to American Sign Language (ASL) for the first time at a day camp for kids with special needs. We were again compartmentalized by our abilities. I spent half day with campers with physical needs and the other half with Deaf and Hard of Hearing campers. I still remember the interpreter who taught me the alphabet, her name was Jennifer. “Stop” was the first sign I learned. I learned more and more each day. I tried to take what I learned home to show my mom. She told me she wanted me to talk, so I was only allowed to sign at camp. I eventually left that camp but throughout my upbringing was exposed to ASL here and there. Another fond memory is a summer co-op for Deaf and Hard of Hearing and hearing teens. I met Deaf and Hard of Hearing teens like me, who had speech ability and had “some” auditory access. We spent the whole summer together. I found out that most of them went to a local public school that housed a Deaf program. This was the summer before entering high school, I told my mom I wanted to go to school with them. I was able to understand instruction in our Co-op and was picking up ASL rapidly. Again my mom declined my request and placed me at the Catholic high school.
I graduated High school and started college. If I had to explain college it is as close to the real world as one can get. College was a complete culture shock for me as I’m sure it is for many college freshmen. I went to college away from home as I got a unique opportunity as a Person of Color. The class size was no longer small and I was just a number. I sat close to the front. I had supports of a note taker and extra time on test for my CP. My hearing loss was smacking me in the face. I could not understand and follow along in class. I went to the Disability office and asked if I could have interpreters in my classes they told me I needed a doctor’s note. I didn’t know how to get this being so far away from home and was afraid to mention it to my parents for fear of being shut down again. I stayed for two years and my grades suffered before telling my parents I wanted to come home. I got the note from my doctor stating that I needed the accommodation of an interpreter. I had seen an ENT since birth and had numerous ear surgeries that I am now able to piece together was due to my hearing loss. I was never fitted for hearing aids. I got my first pair pf hearing aids at around 19 years old because I was able to make the choice for myself. Having access to ASL and hearing aids opened up a whole new world for me, it gave me full and equal access.
I transferred to a community college for a semester while waiting to be accepted to the local Catholic university. At the community college I was denied an interpreter even with documentation because I had speech ability and there was a shortage of interpreters. The next semester I transferred to the school I graduated from.
I met with the University Disability Department and provided all of my documentation for accommodations. I had note takers, extra time on test and interpreters for ALL of my classes. This transition did not come without challenges. I began my college career as a Deaf Education major. When I transferred to the new university my plan was to continue in Education, I also minored in ASL. My grades took a turn for the better. I was able to participate in class and did well academically, I struggled to thrive with applying what was learned outside the classroom when I had to work with actual students because I wasn’t able to use interpreters for accommodation and teach the students at the same time. The dean and one of my advisors met with me. It was decided that Education wasn’t the best fit for me. I decided to major in ASL because I was thriving in those classes. I had two Deaf teachers (I was always the only Deaf student in my class) who took me under their wing. They mentored me and helped me discover my Deaf identity. I graduated with a BA in Sign Language Studies with an emphasis in Deaf Community Resources. My journey did not end there.
A few years later I entered Gallaudet University to pursue a MA in School Counseling with a minor in Early Intervention for Deaf Infants Toddlers and their Families. I experienced another culture shock. Up until this point all of the classrooms I was a student in were either set up in rows or lecture style. I only had to look at the interpreter who was also in close proximately to the professor. At Gallaudet the classroom was set up in a half circle. I thought attending a Deaf university I’d have no issues.
I was wrong!
The only accommodation that followed me was note taker. I struggled to visually track who was signing. The professor would be signing one minute and stop and by the time I realized that one of my classmates was adding to the discussion–another classmate was adding in a different direction.
My blind identity smacked me in the face.
As I look back on my life, I can see where I was sheltered. I can see where the people around me helped me develop coping mechanisms for my Deafness and Blindness. I can see why my parents choose the path they choose for me.
Some might ask, if you could change anything would you? I’d be lying if I said I don’t think about what my life would have been if I had been given accommodations for my deaf blindness like I was for CP. I’m grateful for all I have experienced thus far. It has taught me Self Advocacy and independence. I am now able to empathize with youngsters like myself who are coming into ALL of who they are or don’t know who they are. My experience gives me the space to share with parents what their child’s life may look like. I wouldn’t change it one bit. It is part of who I am. I am proud to say that now (it was a process) I accept my DeafBlind with Cerebral Palsy self as one salient identity.
My story continues!
Because of all of my experience, self-discovery, triumphs, and tribulations– I want my life to be a message to people like myself that if you believe you can achieve. My goal is to normalize disabilities. I have always known that I have to use the labels in order to get the supports I need to have equal access, but that is how it has always been, so I don’t view it as a disability.
My advice to parents of Deaf and Hard of Hearing children and those who are “Deaf And” (my term for Deaf Plus) is follow your child’s lead. In the beginning you make choices “for” them and you teach them as they grow and come into their identity and who they are. You must keep in mind and be aware that even though you walked alongside them and helped them gain the supports, they have to be who they are. Walking alongside them is not the same as being the person living with. The experiences are vastly different and valid.