AYLP Book

Introduction
Christine Wilk
Jose Ocampo
Michael Flores
Nico Echols
Mahogany Brown
Amber Smock
Artessa Mitchell
Michael Price
William Acevedo

Introduction

Advance Youth Leadership Power  (AYLP) is an independent youth advocacy group that started in 2004 at Access Living of Metropolitan Chicago.  We range in age from 18 to 25 years old.  Within our group we combine different disabilities.  For example, some of us have cerebral palsy, epilepsy, or learning disabilities.

We have made this book about education and disability to make college staff and faculty aware about our struggles in higher education.  When you read our book, we hope you come away with a different view on issues regarding students with disabilities.

Christine Wilk

I am 25 years old and I have had a disability all my life.  The disability I have is Cerebral Palsy.  It affects my legs and back and causes me to walk with a limp.

I attended Fenton High School from Fall 1995 to Spring 1998 my experience there was decent the staff knew about my accommodations and I had my own little group of friends.  The type of accommodations I needed where a Resource classroom, more time to get to class and adapted PE.   I transferred in the spring of 1998 to Lake Park in Roselle and had a difficult time with the transfer experience.  The accommodations were all made but I had a difficult time making and keeping friends, which made my last year and a half there unpleasant.

My senior year I was not sure exactly where I wanted to go to college but I did know I wanted to go.  The college I finally choose was College of DuPage.  At first my parents were not completely happy with choice because they had hoped I would live on campus.  As time went on however they realized I made the right choice for myself.  I got my scooter the spring of 1999, which made attending college easier because I did not have to walk everywhere.  I was not fully prepared for the differences from high school to college.  I was used to having a resource classroom teacher to help me with homework, which, I did not have.

I really started to fall apart during the second year of college.  I was going through a small depression phase and could not keep up with class work.  I ended up on academic probations because my GPA was below at 2.0.  At this point I realized I had to do something so I looked at what I would have to do to get off academic probations.  This was one of life’s little growing pains, which I would have to endure.  I had meet with a counselor every time I wanted to register.  All in all it took me almost 3 years to get off academic probation and since I have been off I have not gotten back on. 

Another problem I came across in College was the need for reliable transportation.    Since my parents could not drive me I had to use Pace paratransit bus service.  There were problems from the start only I was not sure how to deal with them.    There was one issue in particular that broke the camels back.  I had been waiting on the bus to pick me up for half an hour and finally it arrived.  I asked the drive why she was so late and she said in a snotty tone Id have to ask base and then proceeded to load me on the bus.  After I was on the bus she refused to tie my scooter down and made me get out of my scooter.  I felt very disrespect and mad.  The whole ride home all I could think about was how I had not been treated like a respectable person.  When I got home I called my mom in tears and she suggested we call pace together and fail a complaint, which we did.  For that point on any time I had trouble I filed a complaint because at least that way there is a record of the incident and it can be resolved.

In the fall of 2004 I applied to Northern Illinois University but was not accepted because my GPA was too low.  I felt like I needed to make them aware of my transportation issue and explain how that affected my Grade Point Average so I wrote a petition.  In the petition I wrote about my trouble with Pace paratransit and how it affected my grades.  I also include activities I was involved in at the time and my future plans.  I was sure this would get me accepted besides my GPA was not that low it was a 2.25 out 4.0 and I needed 2.5 GPA to be accepted with out the petition letter.  I waited for about a month to hear the results and I was very nervous then the day came.  I remember feeling bad all day and then I got home to a small envelope on the table.  I took it upstairs and opened it as I read my heart sank and my eyes filled with tears.  I could not believe what I was reading!  I was not accepted oh the sadness and anger I felt I was so upset.  This experience took some time to get over and I learned something from it, which was that I should have applied to more then on school that fall.  When I apply again that is what I am going to do. 

I am now 25 years old and a sophomore at College of DuPage. I have learned how to better handle filing complaints to get better results.   I have also learned how to advocate for myself in college with the teachers.   I plan to apply to 3 universities for the fall 2006 and hopefully this time get accepted.  I want to become a teacher and teach elementary school.

Jose Ocampo

My name is Jose Ocampo.  I was born and raised in Chicago and I moved to Cicero when I was fourteen.  I have cerebral palsy and I use a wheelchair.  I went to Westmont High School.  I was mainstreamed for my English and science classes, and sometimes for my math classes.  Other than that, my classes were in the special ed classroom.  That classroom had modified equipment and adapted computers, which were not available in the mainstream classrooms. 

After I graduated from high school, I also spent a year at a transition program started by the staff at my high school.  At this program, I learned how to use public transportation, manage my money, go shopping by myself and other things. When I finished this program, I was a little bit scared because I was used to having the teachers do everything for me.  For example, the teachers would go shopping with me or go with me when I applied for Medicaid.  So when I finally graduated from everything, I was scared because all the responsibility was on me.

While I was still in school, I got a job volunteering at a local nursing home, just keeping the residents company.  After I graduated, I stuck with that for a little while, but I got bored.  So I decided that I needed to go back to school to get a degree in computer science. I decided to go to Morton Community College in Cicero.  I sent in my
application, and after I was accepted, I registered for my first classes.  I also met with my disability coordinator for the first time.

I knew I didn’t need help with transportation because my parents were driving me back and forth.  I wanted to use public transportation because my high school teachers taught me how to use paratransit, but my parents were still new to that idea and were nervous about my going someplace by myself. However I still needed other accommodations in class.  At my first meeting with the disability coordinator, we made a list of the things I needed.  For example, I needed a notetaker and extra time on tests, because it takes me a long time to write.  I also need to go over things more than once so I can remember them. That issue was when discrimination started to happen.

The disability services coordinator and I filled out a form that stated that I was a student with a disability and that I would need certain accommodations in the classroom.  I took copies of this form and passed it out to my professors. I was only taking two classes because if I have too much stuff on my plate, I will get overwhelmed.  Anyway, I gave the professors the forms.  One of the classes was music and art appreciation, and the professor followed all the rules.  He gave me extra time on tests and helped me find a notetaker.  To get the notetaker, he asked the class if anyone would be willing to help out.

Dealing with the math professor is when the discrimination came to life.  My disability coordinator was supposed to give the math professor my accommodations form.  When I approached the professor later to ask if she got the form, she said no.  I explained to her what I needed.  I went back to my disability services coordinator to make sure the teacher wasn’t lying.  The coordinator gave me a different story.  The coordinator said that she gave the professor the form.  We ended up filling out another form for the professor and the disability services coordinator gave it to her.

The professor did help me find a notetaker.  However, I also asked for more time on tests and I really had to push her to provide this for me.   I felt like I had to push her to do everything, I mean everything.  She really got under my skin.  She really didn’t know much about disability and I felt like she was in her own little world.  She was hard to approach.  When I came to her with a problem, she would tell me, “My job is to teach, not to help you.”  I had a meeting about her with my disability services coordinator and also my Department of Rehabilitative Services counselor, but dealing with it really freaked me out   But it was the middle of the semester and I felt like I wasn’t getting anywhere. So I ended up dropping out of the math class and stuck with music and art appreciation.

I really wanted to keep going to school, but I wasn’t getting the support I needed.  So I ended up not going back.  I got very depressed and angry, because I was trying to be successful and it wasn’t working out.  I got to the point where I was asking myself, “Why am I here?”  This was about four years ago.  This fall, I’ve decided to start taking a computer class to start my college education again and work towards being successful.   To me, success is following your dreams and following your goals no matter what people say. But it’s hard when people are telling me I can’t do something and that I have to be realistic.

I would tell college professors to remember that every student is different.  In my situation, the math professor thought that simply because I was in her class, I would be able to keep up with all her other students without accommodations.  One bad experience can really hurt people.  I remember lying in bed and not wanting to get up.  I kept everything inside but I really wanted to go back and ask that teacher why she hadn’t paid attention to what I needed.  It took a long time to get over that experience.

Michael Flores

My name is Michael and I am 25 years old.  In 1999, I graduated high school and that fall I attended my first college classes.

In college I did not take many classes, I only took 2 or 3 subjects.  The classes I signed in were pre-credits. They were English, Math, and Music.  With these classes I never had that much of a problem with them because they were easy to accomplish.  Later when I was able to take a credit class that is when I started to have some problems. I got stressed out and depressed because of not totally understanding the work in my classes. So I began to have seizures.

With my seizures my teachers knew about it but still didn’t really understand about my condition.  Neither did the school. Why? Because, whenever I started to have them, they thought their only choice was to call for the ambulance, and bring me to the hospital every time!  They said that was the rule of the school.

The school and the teachers must know, if a student has a seizure, the best way is to keep on talking to him or her while they have the seizure.  Also they should time it to know how long it continues.  Different types of epilepsy may take only 5 minutes but if it is longer, that is when he or she must be taken to the hospital as soon as possible.

Because I was having seizures at school, I had to stop going.  That didn’t make me feel very good, because I had to stay at home all the time.  I volunteered sometimes, but that’s different from going to school.  I would hang out with my friends and they would convince me again of the importance of staying in school, but my parents said I could not go back to school until my seizures were controlled.

I think if my teachers knew better what to do when I have a seizure, then I would probably be able to go back to school.  It’s not a question of whether they were willing to accommodate me, but they did not understand how to help me.

Also, it’s hard for me to write quickly, and during class, I wanted to take notes, but the teacher would go too fast for me.  If I had known that I could request a notetaker, that would have helped me a lot.  Another issue that I had as a college student was taking transportation.  I can only take the CTA buses because I’m able to ride them without being lost.  I can’t drive because of my seizures.  With public transportation it’s hard to be on time. Also, whenever I pay while the bus moves, my balance is not that good so I can fall down because my right hand is not that strong to hold onto anything.  With my seizures, there will always be a chance of me going somewhere that I shouldn’t be at or I can get hurt at any time.

So for now the only thing that’s on my mind is volunteering for about a couple of years to have experience on anything that I wouldn’t have trouble on.  I have a friend who told me about a program called Ticket To Work. That is a program about different companies at different cities or states who can help anyone on getting a job or to be trained.  I believe that people with disabilities can always have a job at any place they want.

Nico Echols

I have been attending Roosevelt University since the fall of 2004.  Roosevelt University is a private four-year college, located in downtown Chicago.  They have a wide variety of programs for students to become involved in.   Unfortunately, they don't have any clubs or organizations that are for disabled students.  Besides that, not all of the professors are willing to make accommodations for special needs students.

For a student attending college for the first time, there are many things to be concerned about.  Throughout high school, I faced a lot of accommodation issues.  I thought that I'd finally be able to get my accommodations needs met in college. I did what I had been taught in high school, and that was to be a self-advocate.  I explained to my professors what my disability was, as well as what accommodations I'd need to help me succeed in their class, such as large printed materials, a reader, notetaker, and even extra time for testing.

I entered a math class, ready to explain to my professor what my accommodations needs were.  I put it into writing on the first day of class to ensure that there wouldn't be any problem.  Boy, was I wrong.  The first time I took the math class, the only accommodation I received was extra test-taking time.  I wasn't pleased at all, so I went to the Academic Success Center, and I told the disability services coordinator what was going on.  Together we wrote a letter to the professor, explaining why we were so concerned.  I even wrote a letter to the professor myself, stating my feelings on the issue.  Unfortunately, we didn't get a response right away.  We tried again, explaining that it was necessary for the professor to help make the accommodations, that the disability services coordinator couldn't do it all by herself.

Sometime after writing the letter, the professor came up to me.  He said, "I'm concerned that you are having difficulty understanding what's going on in class.  Maybe you should get tutoring."  He also thought that I should sit in the front of the classroom, so I could see what he wrote on the blackboard and overhead.  I told him the truth.  Even if I sit in the front of the room, I still wouldn't be able to see what was written on the blackboard and overhead.

I kept updating the disability services coordinator on the situation, and she finally told me that I should drop the math class.  I took her advice, and dropped the course.  I spent the remainder of the semester working with a math tutor.  Although I feel like I could take the math course again, I'm worried about the accommodations.  Even if I had a different professor, I'm uncertain if I'd be able to get accommodations that I feel would benefit my succeeding in that course.

In my English class, I had some degree of difficulty.  In this class, I had to try to read regular-print text.  I informed the disability services coordinator of this situation.  She said, "We are hoping to get a scanner, so that visually impaired students can scan their homework. I'm not sure when we're going to have it."  Since there was no scanner or large print textbooks, I had to rely on a reader to read for me.  Not only was this aggravating, but it was also time-consuming.  The English professor told me that she wasn't happy with the quality of
work I was turning in.  She told me that I should come to her if I was having trouble.  The truth is that was hard to do because she had to help the other students, too.    This was tough because the English class was somewhat large, and I was the only visually impaired student.

I didn't tell my special needs counselor about this problem right away, because it didn't seem like a big problem at the time.  Nancy tried to say that I should have come to her before the problem got too big.  That's often hard to do, especially when she is in the middle of working with another student.

I wouldn't want any other disabled students to have to go through what I've went through in the last year.

Mahogany Brown

My name is Mahogany Brown and I am 25 years old.  I went to high school at Las Casas and Near North High School.  When I was at Las Casas, they would let me play on the computers some.  I have school pictures from Las Casas from after my graduation.  In high school I used to be a cheerleader.  I practiced every day in the luch room. I used to love to eat their lunches.  Sometimes I used to eat off other folks’ plates.  When I got home my mom got mad about that.  I used to ask for seconds to eat cause the food was really good.

I used to go to some English classes all the time and help out and we used to do things like Black history and spelling and writing.  I graduated in four years.  Nobody asked what I wanted to do after high school.   But what I wanted to do was live with my folks and go to church on Sundays.  But after high school I went to live in a nursing home.  My mom is visiting me next week.  I had to go live in the nursing home because I kept getting sick and I broke my mom’s things.  I broke her china glass and my sister broke her china cabinet.  My mom tried to fix the windows. 

I think everybody should get an education.  I want to get an education and buy a house so I can live with my folks.  I should go back and live with my family if I decide I want to.  I did want to stay in high school because I learned some things but not everything.  I wanted to stay one more year.  I did want to go to another state program or go to college. 

Amber Smock

My name is Amber and I'm 27 years old.  I'm deaf and I have worn hearing aids since I was four.  The hearing aids help me to speak and read lips to communicate most of the time, but when I was a senior in college I began learning American Sign Language as well. 

I attended a large public university in Northern California for my B.A., where I double majored in art and English.  I also recently graduated with a Master's of Fine Arts in Writing from a private art school in Chicago.

When I was a senior in high school and I decided to go to a college that was a nine hour drive from my home, my parents became very worried about how we would communicate.  My dad helped me get my first TTY, or teletypewriter, a telephone for the deaf.  I learned how to use a relay system for the first time.  We also bought a computer so that we could e-mail each other.  Once these things were in place, my parents felt better about being able to talk to me while I was away at school.

I wasn't sure how I was going to hear everything in my college classes.  I knew that some of my classes would have hundreds of students in them.  In fact, my largest class ever would have 500 students.  I just assumed that I would sit up front and it would be ok.  My dad thought there might be some other options for me in case just sitting up front didn't work.  So he looked in the campus handbook I got in the first day of the June orientation.  There was a phone number for a place called the Disabled Students' Program (DSP).  While I attended orientation activities, he went over to this office to learn more about their services.  When he came back, he told me that he had met with the deaf and hard of hearing counselor.  The counselor had different options I could choose from.  I could hire notetakers, use an FM system (kind of like a walkie talkie that allows you to only hear the professor), or I could use something called RTC, real time captioning.  I could also have a flashing fire alarm and doorbell in my dorm room.

Well, notetakers and flashing alarms sounded okay, but FM systems and RTC sounded too complicated to me.  I really didn't know if I wanted to work with the DSP, because it would take extra time and paperwork.  I just wanted to focus on going to class.  However, my dad said that I should at least meet with the counselor once to see what he was like.  One meeting sounded okay.  We set up a time for me to meet the counselor in August before the fall semester started.

My last summer home before college was both exciting and a little sad.  My friends and I got all our stuff ready for leaving and had goodbye parties.  However, I was a little nervous about leaving my family.  In August, I drove up north with my parents and my sister to move into my new dorm room (with the flashing alarm and doorbell system).  I arrived before my roommate, so I had the room to myself for a little while.  My family helped me move my things in, and then got ready to leave.  We all went down to the parking lot.  As we were saying goodbye, though, someone started crying and then we all started crying.  My family left, and then I went up to my room and cried some more.  But after a little while, I started feeling okay again, because I was at COLLEGE!!!  And my life was going to change.

Before classes started, I had my meeting with the DSP counselor.  He reminded me of my options and asked me what I would like to do.  I said that the notetakers sounded good to me.  For some of my classes, the school had a paid notetaking service because the classes were so big.  For other classes, the DSP would pay for a notetaker, but I had to find someone who would do it.  I also agreed to try the FM system for one lecture class.

All of my options involved extra work.  The notes from the notetaking service had to be picked up on a regular basis from their office.  When (and if) I found notetakers in my classes, I had to have them sign paperwork to contract them to do the notes, and then after every class I had to go find a copy machine and copy the notes.  The FM system was only on loan day-by-day, which meant I had to pick up the system before class and drop it off right after.

Did any of it help me?  Well, the notetaking service was handy, but it was only available for extremely large classes.  Finding notetakers was hit or miss.  Sometimes, my notetaker would be a friend, and they often refused to take any money for helping me out.  Sometimes, the notetaker was someone I did not know well and could not rely on.  When that happened, I had to talk with other students about looking at their notes.  I also did not think it was fair that I had to find my own notetakers and act as a boss.  I was at college to study, not to hire people.  Other students did not have to hire people.  The FM system was a real pain in the butt.  I hated trying to remember to pick it up and drop it off, and the professor looked at me oddly at first.  The FM system worked only a little bit better than my hearing aids alone.  I hadn't tried the RTC, but felt discouraged because I knew that it was something that had to be arranged and set up for each class, and I had a feeling that it would mean extra responsibilities for me as well (what if I couldn't show to a class?  I'd have to cancel with DSP a certain amount of time beforehand).

After my first semester, I began just relying on talking to my professors and TAs before the classes, and getting notes from friends.  I wanted a system that was less formal and also less obvious.  Sometimes this worked, and sometimes it didn't.  Sometimes I would have professors who would make no effort whatsoever to speak clearly, without turning their backs.  Sometimes I would not know anyone in my class and I would have to actually announce to the entire class that I was looking for a notetaker.  I found this embarrassing and unnecessary.  Like I said, I felt I was not at college to be a boss.  Going to class and dealing with accommodations could be very tiring, as well.  I have to also say that I had some professors and notetakers who were great.  They were thoughtful and helpful without having to know all the private details of my disability.  There were ups and there were definitely downs.

In my senior year at college, a classmate filed a lawsuit against the university.  She said they were not providing appropriate accommodations.  I helped testify, explaining my bad experiences with notetakers.  The school needed a better system of hiring notetakers.  Many other students also testified, with a wide range of disabilities.  Eventually, the university lost the lawsuit.  Taking legal action is one way to resolve problems with your accommodations at college.  It is probably your very last choice, for when things are really bad.  I know that sometimes students are afraid to speak up about the quality of their accommodations because they feel that they might be punished.  My feeling is that if your accommodations are poor, you *are* being punished anyway.  You are not getting the same education as everyone else.

I graduated with a very good GPA, despite the accommodations situation.  Later, I entered graduate school to earn my MFA in Writing.  This time, I took with me the lessons I had already learned about accommodations.  I told the school's disability services office what I needed as soon as I was accepted.  I explained that I would need notetakers and that the notetakers could not be college freshman or sophomores.  They had to be reliable and capable of taking notes for advanced classes.  We worked out a system where I did not actually have to find my own notetakers.  Instead, I worked with my department's program coordinator.  The program coordinator found students in my classes to take notes for me.  She also approached them about taking notes for me and took care of the payment process.  All I had to do was make sure that the notes were photocopied after class.

I also spoke up a lot more in class about my needs.  If it was a small class, I asked that we sit in a circle so I could see everyone.  If papers were being read aloud, I asked people to bring an extra copy so I could read along.  If the classroom was very noisy from the air conditioning system, I asked that the classroom be moved.  Overall, I was much better at advocating for myself, although sometimes I still encountered attitude problems and oversights from professors.  I felt that professors needed to be better allies and that once I asked for a particular accommodation, that accommodation needed to be provided in the exact same way every time it was necessary.

I felt that I was successful in this program and was happy that I had pursued an MFA, but six years of college-level education has taught me that a lot more needs to be done for college students with disabilities.  Accommodations need to be consistent.  Professors need to be consistently helpful.  Some professors need improved speaking skills for the classroom.  It is not okay to skip accommodations even once.  Because my disability is not obvious to the naked eye, people sometimes forget that I need some assistance with communication.  This is no excuse for accommodations not to be provided.

Artessa Mitchell

Hi my name is Artessa Mitchell. I’m twenty years old and I am a senior at Jones College Prep. I have been at Jones College Prep for a year and a half now. Before that, I attended Spaulding. The school was accessible, however, the physical therapists were poorly trained. One was once helping me walk and she dropped me and I busted my lip. Classes were good, but the food was gross. We were never allowed to leave the campus once we got there. The bus driver wasn’t very nice. I had a counselor who helped with transitional services. We talked about a work program, but my mom wants me to be in school for a while. I was treated the same as students at the school without disabilities.

Now, at Jones College Prep, because of my disability, I’m having some trouble being able to take the classes that I want. I feel I’m treated differently than the other students. The facilities are okay. Once the elevator got stuck. Everyone is nice to me. I’m going to graduate this year and I hope to go to college to study Nursing or Diet. I’m going to Loyola College.

Michael Price

I am 20 years old and I graduated from Jacqueline Vaughn High School.  Now I go to Harold Washington College.  My program is in the Office of Vocational Training and Development.  I will be going there for 18 months.

The kinds of classes I take are, for example, English, writing and math.  When I leave the program, I’m going to get a job. I’m working on that right now.

College is important because you have to know what to do when people ask you to be responsible for something.  You have to be responsible at jobs. If you didn’t go to college, you wouldn’t know how to do your job.

People with disabilities need to be able to go to college so they can get jobs.  You need to be able to pass all your classes to show that you’re smart enough and that you can learn things.

If someone told me that I couldn’t go to college, I would say, man, you need to be able to go to college so that you don’t sit at home for the rest of your life.  I would like to move out to my own place some day and I need a job to be able to do that.

My experiences with accommodations, By: William Acevedo
In high school, I did not experience a great need for accommodations for I had not acquired my disability until the end of it.  However, it did become an issue when I was in need of extra time to complete my finals in my senior year because of hand tremors that made it difficult to write.  Since my private high school never had a student with a disability before, they were not aware of how to handle the situation, but still worked with me to the best of their ability to ensure that my needs were met.  And from that point, it is when I learned that I needed to look into how my rights can be protected in the future, so I sought the advice of Access Living to learn more about disability rights and later applied them to my life as a young adult.

I later registered for classes at Wright College, part of the City Colleges of Chicago, where a Special Needs Office was already in place.  Through the special needs office, my rights were protected in all areas and I was granted full-attention by my professors to ensure a positive outcome throughout each semester.  I was given extended time for tests, tape-recorders, printed outlines, and note-takers to sit with me during classes as needed, and never did it create a problem between students & faculty, or students with other students.  In college, I can honestly say that I was provided full-accommodations throughout my time as a student.

Any student who wants an education should be provided one.  It should not be a matter of disability, but of the willingness to try.  I also feel that it is crucial for every school to exercise the rights that were put in place for students with disabilities and to provide a comfortable experience, while still providing a curriculum that requires the student to put in their efforts as well, for an education should always be earned. Any person with a disability should never be discouraged from going to college.

 

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