January 2024: Climbing the Same Mountain Together

LENS, which stands for Lived Experience Network Speaks, is a blog provided by Meet The Need NC from our LENS Advisory Group. LENS includes individuals with intellectual and/or developmental disabilities (I/DD) experience, including people with I/DD, families, and caregivers with separate groups for those who speak English or Spanish.

We provide a space for them to share freely, but these opinions do not necessarily represent those of Meet The Need NC or all members of the LENS Advisory Group.

This month, you will read from two individuals with I/DD about their experiences during their school years and how they and their families worked together through the good and not-so-good times. The guest bloggers are Jonathan Ellis and Cheryl Powell.

Attending Public School with I/DD: My Challenges and Successes
By Jonathan Ellis

In 1978, I began my public schooling at Riverview Elementary school in Murfreesboro, North Carolina. During kindergarten and first grade, I was transported to school by cab because the county did not have access to buses equipped with lifts. In second grade, my parents were building our house, so my teachers would make sure that either I did my homework at school, or I did not have homework for that entire year. In third grade, I had multiple surgeries, but because I was so in love with school, my teacher had a pallet on the floor, and I just laid there and listened. Before I was eight years old, I was in a stroller and a manual wheelchair, and my classmates would fight over who would push me to the lunchroom. One kid accidentally made me fall out of my chair because before I could tell him to tilt my chair, he pushed me straight forward out of the building.

While dealing with all this in the meantime, there were the meetings with my mother, the director of exceptional children and the principal. My mother dealt with my individualized education plan (IEP) year-after-year.

By fourth and fifth grades, things had smoothed out a little. At times, I wished I could be in special education classes, but my parents fought to have me in a mainstream classroom setting. Looking back, I am very appreciative of my parents’ efforts, as it helped to put me on the path to where I am today. I can recall times when the principal would see my mother pull up and tell everyone to just give in to her demands so she would get off his campus. That proves to me how hard my mother fought to give me the best education possible.

Like most children, by middle school, my love for school dwindled so much that some days I faked illness to get out of going. Considering how sick I was so often, people usually believed me. One time though, my principal stopped me from going to the secretary to call my mother. She made me return to class telling me I could make it a couple more hours. That lasted a half hour, before I managed to persuade her to let me call my mother to come get me.

In eighth grade, shop class didn’t have a ramp, so classmates lifted me through the doorway. I waited all year hoping the teacher would give us a ramp building class project, but it never happened. We had a fire in the boiler room and my friends had to carry me out the doorway. That fire though, still never lit a fire under my shop teacher as a sign that a ramp may prove helpful.

In ninth grade I was in Murfreesboro High School, but in tenth grade, we merged with Hertford County High School. Most teachers gave me a five-minute head start because I used the elevator to get to my next class. I also got to leave school ten minutes early because it took longer to load the bus when students with disabilities rode it.

In high school, I loved sports. One of the cheerleader’s fathers took me to basketball games. When my mother came to get me one night, the whole gym heard me yelling at her because I wanted to stay until the end of the game like all my friends.

At my graduation, my classmates proved how impressed they were with my perseverance. After I spoke with my principal and informed her how much I wanted to cross the stage, a ramp was built, and I received a standing ovation from everyone in the gym.

Three weeks after graduation, I went to summer school at St. Andrews University in Laurinburg, North Carolina, where I had to take two classes. I did this as a trial run for college classes in the fall, which was required for people with disabilities at the time. After that first short semester, I returned home. After scoring a “B” and a “C” in those classes I received an acceptance letter to return for fall semester. It still took me a full year to convince my parents to allow me to return to St. Andrews to further my education. They were hoping my summer away would teach me that I did not want to return, but instead it just fueled my hunger for more. Five years after returning, I graduated with my bachelor’s in arts in Communications with emphasis in public relations.

Today, I work as a certified consultant for Scentsy, a direct selling company. I am also actively involved in self-advocacy for people with disabilities.

About the author: Jonathan S. Ellis’ hometown is Murfreesboro, NC. He achieved a bachelor’s degree from St. Andrews University in 1996. He has worked for Easter Seals and UCP in Wilmington. He’s currently a certified consultant for Scentsy and is an active self-advocate. Jon’s hobbies include music, volunteering at nonprofit animal shelters, volunteering with nonprofits to help raise money, and visiting the beach.

How Having Family Support Leads to a Successful Outcome for People with Disabilities in School

By Cheryl Powell

My name is Cheryl Powell and I have cerebral palsy, a developmental disability. I was born with it due to the fact that my mom was a diabetic.

My being disabled didn’t mean that my parents or my family saw that as some sort of excuse for me not to do well in school or do well in life. My mother and my father expected me to do well and they expected me to do my homework and to go to college someday.

So I went to school and I did attend what they consider a “special class” or a “special needs class.” I’m not sure whether that was the name of it at the time but I only attended one of those classes. The rest of my classes were mainstream classes. Mainstream means that they were classes in which people who did not have disabilities were being taught. I was one of around between three and five students that had a disability in the classes.

As I was growing up, I didn’t want to go to school. I didn’t like school. I wanted to stay home and just sleep and watch TV and be with my mom. That’s all I wanted for a lot of years. I had chronic absenteeism. However, that all changed in the 10th grade. My mom had unfortunately passed away when I was 12 years old and that left my daddy and my granddaddy and my uncle to raise me on their own.

My dad chose to get remarried to a lady who had three children when I was 16 years old. I was an only child my whole life up to that point and it was extremely hard for me once he got remarried. I had no desire to stay at home. I wanted to get away from the house so I started going to school and I started keeping up with my homework and my assignments and I was doing well. I started getting on the honor roll and getting good grades. I continued to do well through graduation. I graduated with a high school diploma, not with a certificate of attendance which for some individuals with disabilities that is appropriate. (Editor’s note: A certificate of attendance is no longer offered by the NC Department of Public Instruction and is not supported as best practice under the Individuals with Disabilities Education Act (IDEA) 2004. For more information: https://www.dpi.nc.gov/districts-schools/high-school-graduation-requirements.) 

I felt that the best opportunity for me was to go to community college, and therefore, I went to Cape Fear Community College and stayed for two years and then transferred to the University of North Carolina at Wilmington. While there, I studied social work and earned my bachelor’s degree in social work in 2003. Following that it took me about two years to find a job.

I started work as a direct support professional for Easter Seals UCP North Carolina/Virginia for seven years. Following that I took around 10 years off because I had made too much money and that caused me to lose my benefits. So, I basically lost my benefits because I chose to live the life I wanted to live…my own life. Not a life dictated to me by the United States government and the state of North Carolina.

This is something that a lot of us face as we live our lives with disabilities. I choose to now be a self-advocate. I applied to the North Carolina Council on Developmental Disabilities and was appointed by Governor Pat McCrory. Once beginning my work with the NCCDD it wasn’t long before I was voted in as vice chair twice and I served as a member for eight years.

Serving on the NCCDD has led to more success for me. I’m honored by the privilege of getting to know people within the disability community both individuals and professionals. I’m working again and working to maintain benefits and things of that nature. I’m still able to work by working from home. I currently work/serve as co-chair of the Meet the Need NC initiative called LENS (Lived Experience Network Speaks). I share this responsibility with a very capable and very smart parent by the name of Diane Coffey and the two of us work very well together and I enjoy what I’m doing. Also, I’m happy to say that I have a small part in the Work Together North Carolina initiative, where I provide consultation on things like their website.

I’m very happy with where I’ve landed so to speak. Back in school I was not bullied. However, there were a couple of incidents where kids were kind of rude. One girl when I was in 7th grade looked at me and said, “you’re pathetic!” I didn’t say anything to her. I was a bit of a loner. I would go to study hall so that when I got home at night I could spend my time watching TV and being with friends and I didn’t have homework to worry about because it was already done. I was around 18 and near graduation time, when I was contacted by Vocational Rehabilitation and through testing and meetings with them, I’m proud to say that they were able to fund my college education and basically got my degree for me paid for. My uncle took me to school everyday in college and that’s part of having that supportive family that is so crucial for success in my opinion.

About the author: Cheryl Powell was born and raised in Wilmington, NC, and graduated from UNC-Wilmington with a degree in social work in 2003. She worked as a Direct Support Professional for seven years for Easter Seals UCP. In 2015, she became a member of the North Carolina Council on Developmental Disabilities (NCCDD), and recently completed her eight-year term. She also served as chairperson of the NC Empowerment Network, a statewide self-advocacy group. She is a member of the following organizations: NACDD, DSP Workgroup, Work Together NC, LAND Advisory Council, Technical Advisory Group (TAG). Cheryl states that she wants to do everything that she can to support and advocate for others with disabilities. She has been married to her best friend Billy since 2012 and has a chihuahua named Annabelle who she adores.