Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities
The Role of Self-Determination in Promoting Self-Advocacy
I am Roqayah Ajaj, a PhD student in Evaluation Studies at the University of Minnesota. I have a Master of Arts degree from the university in Educational Psychology (Special Education Track) and in Organizational Leadership, Policy, and Development (Comparative International Development Education Track). I am blind, and I am from Saudi Arabia. Improving my self-determination helps me overcome navigational and educational challenges and get to where I am today.
When I was growing up in Saudi Arabia, I received my education in public K-12 schools near my home. My schools did not have any accommodations for students who are blind. There were schools in Saudi Arabia that provided services for people with visual impairments. These schools were far away from my home, so my family put me in public schools nearby. I was always the only student who was blind in all of my classes. I had many challenges, mainly because educators and students did not know how to accommodate someone who was blind or someone who was different from them. I was told in high school that I could not continue my education because it was a waste of my time and my teachers’ time.
Roqayah was among the attendees at the International Association on Special Education 16th Biennial Conference in Magamba, Tanzania, in July 2019.
Despite these obstacles, I graduated from high school with a purpose to improve education for people with disability and especially those who are blind. I attended King Abdulaziz University (KAU) in Jeddah, Saudi Arabia. The assistive technology and adequate accommodations that were employed at the university were the tools that enabled me to be a successful student. I felt so happy and included with the accommodations I received (e.g., the reader and the assistive technology that were employed at KAU, which enabled me to be a productive student).
After I graduated from KAU I was passionate to continue my education and to help raise awareness about people with disabilities. I received a scholarship from the King Abdullah Scholarship Program to study abroad for my Master’s degree in the United States. Because English is not my native language, I decided to go to an English as a Second Language (ESL) school in Texas to study English and prepare for graduate school. My siblings were living in Texas at that time. I depended heavily on my sister and her friends to guide me from my apartment to my classes. Depending on others frustrated me because I am more punctual than most people around me. I could not express my feelings. I depended on them, and I did not want to be viewed as an ungrateful person. One day, one of my sister’s friends asked me why I didn’t use my white cane. I paused and said, “I know how to use the white cane from my training in Saudi Arabia, but I don’t know how to navigate the campus.” I asked her to show me the route from my apartment to the bus and then from the bus to the building where we had our classes so I could go by myself. I, honestly, was very hesitant. Even though I received mobility training in Saudi Arabia, I did not feel comfortable enough to use the white cane there due to the negative perceptions and the stigma attached to disability. I had never been outside by myself. I always had somebody helping me or walking with me. I thought that it was time for me to get out of my comfort zone and try something new. I wasn’t happy with how I was depending on others and their availability to help me navigate. Relying on their schedules and waiting for them was not ideal.
My sister and her friends looked for a blind school to teach me mobility training. The school sent an orientation mobility trainer. He showed me the route twice, and then my sister and her friends walked with me multiple times until I memorized it. I still remember the first day that I went to class by myself. It was an exciting day; I left home earlier than usual so I could catch the early bus because it was quiet and less crowded. I got onto the bus by myself and went to my class. The bus driver was very friendly and helpful, and he verbally guided me to my seat. I was pleasantly surprised by how people were interacting with me. Unlike when I had a guide with me, people were more willing to approach me while walking and say hi. I could hear their smiles in their voices. When walking with a guide, the guide would describe people’s smiles and reactions to me. When I used my white cane, I had my own interactions with people. This experience was the beginning of a new chapter in my life where I was more independent. With the help of my sister and her friends, I was able to turn the page to this new chapter. Even though I didn’t know my surroundings well, being able to walk independently from home to class was a significant accomplishment that made me very happy. However, in Texas, I had a lot of educational challenges with the school, so I decided to move to another school, and Minneapolis was my choice.
I was told in high school that I could not continue my education because it was a waste of my time and my teachers’ time. Despite these obstacles, I graduated from high school with a purpose to improve education for people with disability and especially those who are blind.
I was admitted to the University of Minnesota for my Master’s degree. I studied special education because I thought that once I understood the needs of people with disabilities I could advocate for them strongly. But I was also interested in leadership and policy development, so I enrolled in the Organizational Leadership, Policy, and Development degree program.
When I first arrived in Minneapolis, I was alone and did not know anyone here. I felt lonely, especially the month before school started. I faced the same navigation challenges that I had when I was in Texas. However, this time I was alone and did not have people to help me go from my apartment to the school. One of my teachers in Texas connected me with a member of the English club (a group of English speakers meeting weekly with international students to help them practice their oral skills) here in Minneapolis. She helped me by walking me from my apartment to the English club, and went with me to a few of my first meetings with the Disability Resource Center (DRC) at the university. At my first meetings at the DRC, I requested all the accommodations I needed for the school year, such as providing me with an access assistant and notetaker and converting my books to electronic format. I had to make sure they were able to provide me with all I needed, as I did not want to face the same educational access challenges I faced in Texas. Yet, I still did not know how to navigate the campus or do anything outside of home by myself.
I was afraid to go outside by myself and investigate my surroundings. I am not a tech-savvy person and did not know how to use navigation apps (e.g., Google maps). I did some research with friends on how to get orientation and mobility training. I was able to receive training through Minnesota State Services for the Blind (SSB). I received training prior to the first semester of school, but I was only taught the route from my apartment to the buildings where I had my classes. I was amazed by the speaking traffic lights and the tactile paving in Minneapolis as they helped me orient myself and memorize the names of the roads quickly. However, I wasn’t able to do anything besides go to and from my classes. I did not know what stores, shops, or restaurants were around me and how to use public transportation. For most days, I was surviving on pieces of chocolate and coffee because I didn’t have an assistant or a friend who could go grocery shopping with me. When I would go out to eat, I would buy extra food because I didn’t know when I would have the chance to buy food again. A restaurant owner was kind enough to deliver food to my apartment when I told him about the challenges that I was facing; that meant so much to me. I wanted to learn about the different stores and the names of the buildings around me in order to feel more included and independent. I did ask SSB if they could have someone teach me how to navigate my area. Surprisingly, they said they would have me take training on how to navigate unknown areas. I wasn’t sure what they meant by that as I wasn’t trying to navigate other areas, but I accepted the offer.
I went to a blind school, where they had me wear a sleep shade during the training so I could learn how to rely more on my other senses (e.g., traffic sounds, different smells, and various landmarks like benches or holes in the street), which helped me focus on myself and not worry about others’ reactions. During my training with the blind school, they revisited all my skills in using the white cane. Also, they taught me how to walk at night because I was only walking during the day. Part of the training I received was on how to find an address of a specific store and look for the store on the particular block. I never thought that I would go to each store and ask people what’s the name of their store. When they had me do that the first time, I felt so shy, embarrassed, and uncomfortable. I thought of skipping this training. Then I realized that’s the only way for people who are blind to rely on people working in the stores or kind strangers to help direct them to their specific destination. After I became confident going to particular stores or areas by myself with the blind school, I received training on how to use public transportation. This was another new experience for me. Public transit uses voice announcement systems to announce the next stops, which helps me know when I should get off. The voice announcement system also helps me memorize other stops that are on my way. Without this feature or accommodation, I may not have been able to rely on public transportation.
When I was a child, I was shy and lacked the necessary skills to advocate for my needs. Through college, I learned that self-advocacy is a key for success.
After I finished my training with the blind school, I became more independent in walking by myself, exploring my community, and visiting nearby places such as restaurants, grocery stores and coffee shops. I became stronger and more independent because I knew how to interact with people in these stores and others. I learned how to get help at a time of need, how to educate people on how to guide me or help me, especially in the grocery stores. Every time I interacted with people, I learned new things, and saw how people are kind around those who are blind. They might just need directions or instructions. I became very familiar with people in my community. Now, I travel overseas by myself, and I know how to work with different people, different abilities, and teach them how to assist me if they have not worked with somebody who is blind before.
I was not only able to teach people how to give me verbal directions or walk with me, I was also able to advocate and request my academic needs both from the Disability Resource Center and faculty. During my Master’s studies, I faced some educational challenges, mainly because I did not know how to advocate for my needs properly. I was learning how to navigate the system and how to appropriately make my needs known and explain how they could help me be a successful student. Learning how to advocate for myself is not easy because I must constantly remind myself that if I do not speak up, I will not receive the appropriate accommodations that I need. It gets easier over time. Learning how to assist graduate students with visual impairments is not something that comes naturally to people. I figured in order to have a good experience in my classes, I have to meet with both my professors and disability access consultants ahead of time and schedule an in-person meeting with them to talk about my needs at least a month in advance. I was very determined and knew exactly what I needed to be successful in my Master’s degree. When something goes wrong, like losing one of my accommodations, I schedule meetings with all stakeholders involved to restate my needs and how to meet them. I must advocate for my needs multiple times a semester, causing loss of valuable educational time. If I do not speak up for myself, no one else is going to advocate for me. When I was a child, I was shy and lacked the necessary skills to advocate for my needs. Through college, I learned that self-advocacy is a key for success.
With the support from my academic advisor, the Disability Resource Center, and professors, I was able to graduate with two Master’s degrees in May of 2018. Since I graduated with a high GPA and met all the requirements for the scholarship, I received another scholarship from the King Salman Scholarship program for my PhD. Now, I am in my second year of my PhD at the University of Minnesota.
I am grateful for all the support I have received from my country, Saudi Arabia – for trusting me and my talents, and for providing a scholarship to study abroad. I am also grateful for the support that I received from my academic advisors, the Disability Resource Center, and my friends throughout my academic journey. I have a lot of goals I am hoping to accomplish, all of them aiming to empower persons with disabilities in both the educational and community environment. One of them is to help enable people with disabilities to discover their strength to be able to reach their full potential and live independently.