Hello All. Nice to see all of you again. For this presentation Steve and I will talk about some of our experiences with having cerebral palsy. I could easily write a book on this. But I will also share some of my experiences as a student at UC Berkeley, where I graduated and received my Bachelor’s Degree.
Just like most of you, when I go out in public, people automatically stare at me, mainly because I am in a wheelchair. I remember my mom always telling me, “sit up straight so people don’t stare at you.” I eventually realized that people weren’t staring at me because I wasn’t sitting up straight. I could be leaning to the side or all dressed up or dye my hair purple, green, or blue, but no matter what I do or how I look, people are going to stare at me simply because I use a wheelchair, and the fact that I have a communication device is just another reason for people to look at me.
The reactions I get are a wide range on the spectrum. I’ve seen looks like they can’t believe that I’m out in public. Sometimes people who I don’t know will come up to me, and say they will pray for me that God will heal me. I just look at them and say, okay. At this point in my life I feel like if God hasn’t “healed” my cerebral palsy by now, he isn’t going to. Personally, I feel God made me this way for a reason.
Having to use a communication device trips people out. If they don’t know me, they will talk to me like I’m 4 years old and tell me, I’m so cute. So annoying. Others will ask me a question, but before I’m done typing my answer, they are already gone. Why bother asking me something if you can’t wait for the response. A lot of people are just so impatient. These incidents happen to me often. I had a few people who see me type on my talker, and they will just start typing on my talker without asking me. For example, I’ll ask someone, “What’s your name?” And the person will literally start typing on my talker, “My name is.” I will just move their hand away, and whoever is with me will tell the person not to touch my talker. The person will ask, “How do I talk to her?” My friend will tell them, “talk to her like you talk to anybody else.” The person will ask, “She can hear me?” My friend will say, “Yes, she can hear just fine.” It’s amazing how so many people can’t comprehend that even though I use a talker, I am still able to hear and understand what’s going on. Then there are those who think since I can’t really talk, that I must be deaf or hard of hearing, so they will be right next to or in front of me yelling at me. I’m thinking, I’m not deaf, but if you keep yelling at me, I could become deaf thanks to you.
I just think that people are so uneducated and clueless about disabilities. Unless they are around others who have disabilities, they really don’t know. They don’t know what to do, what to say, or how to behave, when they are confronted with a person with a disability. They think that just because we are disabled we can’t do anything or that we don’t have a brain. I have come across people like this numerous times. For example, I will be in a restaurant having a conversation with Steve and some friends, and suddenly a random stranger will walk up to us and ask whomever I’m with, “Can she type?” or “How does she know how to type or spell?” The person with me will say, “Yes, of course she knows how to type. She has a bachelor’s degree from UC Berkeley in English and a minor in Education. She also has her own art business and she wrote, illustrated, and published 3 children’s books.” By the looks on their faces, we could tell that they don’t believe us. They probably think, how could I have possibly graduated from UC Berkeley and do all of that? So we will give them my business card and tell them to go to my website and check out my art. Whether or not they actually do that, who knows.
My student life experience at UC Berkeley was amazing.
UC Berkeley has an incredible program called The Disabled Students’ Resident Program (DSRP), for new students with disabilities. I was accepted to UC Berkeley, and automatically into the DSRP program because of my disability. When I moved to the Berkeley campus, I lived in the dorms my first two years. The DSRP program is only for one year, but during that year, I was taught how to live independently. Through DSRP, each student was assigned to work with a coach on a one on one basis. We learned about independent skills, how to sign up for In Home Support Services (IHSS), how to find attendants. One way that I was taught to find attendants was to make flyers and put them up around the dorms and in certain areas around the campus. If they were interested, they had to email me and we would schedule an interview. My DSRP coach taught me how to interview people. What questions to ask them. As well as helping me figure out what I would need the attendants to do in terms of my personal needs as well as what accommodations I needed for my classes. My DSRP coach also taught me how to hire and fire them, how to schedule them, how to tell them what I needed them to do etc. All of these things were completely new to me. I never realized I would be in this situation since I lived with my parents all my life. This was the first time I had to find and hire attendants, as well as scheduling them around my class schedules.
To get accommodations for my classes, I had to go talk to the people in the Disabled Students’ Center office and tell them what I needed. I got note takers for all of my classes, books on tape, and extra time for my tests. I also had attendants come read to me if they didn’t have my text books on tape. Since I am such a slow reader, having my books on tape and the attendants reading to me was a tremendous help to me. Those attendants also helped me by looking over my papers and editing them. When I had trouble in algebra, the Disable Students’ Center got a tutor for me. Fortunately, I was able to tell the office what I needed to succeed in my classes.
The DSRP staff was so impressed with how quickly I got the hang of this attendant process and being able to tell others what I needed and wanted quicker than any of my peers who were in DSRP with me. I remember some of the DSRP staff congratulating me on hiring an attendant so quickly. At the time, I didn’t fully understand what the big deal was about getting attendants since DSRP had staff 24/7 to help us with anything we needed help with. As time went on the staff and my coach explained that after one year I wouldn’t have the DSRP staff on hand at any time anymore. It was only a one year program, so we all had to figure out pretty fast the process of living independently, finding, hiring and getting attendants to help us with our daily activities on and off campus. We were going to be on our own soon enough. It turned out that I was so successful conquering the DSRP program and the attendant process, that the program director asked me to co-teach the DSRP class the following year. And that – I did! That was my very first experience teaching, and I enjoyed it a lot!
When I attended UC Berkeley they had a Disabled Students Union, which was a club for the students with disabilities. I joined this club my second year mainly to make friends. Everyone in this club had all kinds of disabilities, and everyone always supported each other, and had fun. At the beginning of my second year in this club, they nominated me to be the new social director, and I won. For a year I had to plan a social outing/activity for all of us to do once a month. Usually on a Friday or Saturday night. This position was fun but tricky because there were about 25 people in wheelchairs. Finding activities that can accommodate 25 wheelchairs wasn’t easy. Luckily, not all of them were able to go to these social events every month. No matter where we went, we usually ended up playing musical chairs, and having people look and stare, but we didn’t care. I planned events like going out to dinners, ice cream socials, a movie night at the rec room in the dorm, meeting at a bar, etc… It was always fun, and I was thankful that they gave me the opportunity to take the group out once a month just to enjoy ourselves.
Going to social gatherings like these is a good way to meet people and make new friends. Since I am so easy going, I’m always willing to try new things. I heard about the Disabled Students Union thorough a friend, and decided to go, and I ended up being the social director for a year. I never expected that to happen. Another way to meet new people and make new friends is getting involved in something you like doing. For example, I enjoy writing so my friend, Patty, runs a disabled writing group. She asked me to join, so I did. The group wrote a whole play and we decided to perform it in front of an audience. We all invited our friends and everyone else. Patty invited her friend, Steve to our performance. I was Wonder Woman in the play, so I had a Wonder Woman costume on so that was what I was wearing when I met Steve. And now Steve and I are married. So my advice to you is to get involve in whatever you are interested in because you never know what will happen.
As you may or may not know Berkeley is the home of the disability rights movement. So driving around town in wheelchairs is different from just about anywhere else. The people in Berkeley are much more accepting, educated, and patient about disabilities. It was great. One story that I remember is when my friend, Tom, asked me to go to Walgreens with him. Tom was in the DSRP with me, and he had cerebral palsy, used a wheelchair and a communication board. His communication board was just a board with words and the alphabet. It was not computerized, and didn’t speak like mine does. So Tom had to point to words or if the words weren’t on the board he had to point to each letter. Plus, he was very spastic so when he pointed to a letter or a word, he couldn’t hold his hand still. He would point to the area where the letter or word was and the person had to ask him if it was x, y, z. Tom would nod yes or no. So communicating with Tom took a lot of patience. Somehow I was always able to figure out what he was saying, unlike most of the other students in the dorms. The day he asked me to go to Walgreens with him, I didn’t think to ask him what he wanted before we left. When we got there I asked Tom what he wanted, and he pointed to G, and that was it. I was waiting for him to continue pointing to letter to spell something out, but he just sat there and he couldn’t think of how to spell what he wanted. So I started typing out words that I could think of that started with the letter G, like glue, gum, glasses, but Tom kept nodding, no. Then one of the Walgreens employees came and asked if we needed help. With my talker I told him that my friend wants something that starts with G, but I wasn’t sure what. So the employee also naming out things that started with G, but Tom kept nodding his head no. Then the guy suggested we walk around the store so that Tom could show us what he wanted. So that was what we did, and the employee even went around the store with us. After all of this, Tom just wanted gloves. I couldn’t believe he couldn’t spell gloves. It was frustrating, and I wanted to strangle him. Although, it was surprising how patient and helpful the Walgreens employee was to us. Most people are not so accepting and tolerant. When we got back to the dorms and told the DSRP staff about our shopping trip, after they had a good laugh, they were proud of us for doing it independently, which was the main goal for the DSRP program.
I can easily go on and on about my life experiences at UC Berkeley, but I know you guys go home at three o’clock.
My message to you all today, is we need to help people realize that individuals with disabilities can be brilliant, accomplished, educated, entrepreneurs and independent. They can be anybody they want or aspire to be; and they can accomplish anything in life with love, support, determination and perseverance. We need to treat everybody equally and with respect no matter who they are. It is just common sense.
Thank you again for having us, and I hope my message motivates and inspires all of you. Thank you.