Honoring The Life of
Naeem, had epilepsy and some learning challenges. Those challenges did not define Naeem but affected his life in many ways. Naeem was 3 when he started having seizures after a fall. When he had his first seizure, I took him to the doctor and after numerous tests was informed that he must have had a predisposition to seizures and his fall must have brought them on. Once his was diagnosed, I had to educate myself about the different medications and other treatments and the possible side effects. This education involved lots of research and conversations with his neurologist who would try different medications to see which one worked. I remember a heated argument with his neurologist about one medication that I knew caused severe side effects that I refused to put Naeem on: His doctor said, "what do you want me to do?" I said, "try something else". While the medication may have been effective; the side effects weren't any that I wanted to have Naeem subject to. Finally, we were able to find the right combination that helped stabilize his meds. With all the struggles to find Naeem the right medication to control his seizures, it affected him at school.
In school we discovered that due to his pet mal seizures, he was missing a lot of instruction time. What teachers thought was bad behavior and Naeem not paying attention was really seizures that had gone undetected. He fell behind and I made the decision to have him repeat 2nd grade. I did not make that decision lightly as it meant that he would be in the same grade as his younger brother. While Naeem was in 2nd grade, he was evaluated for special education services. He automatically qualified for these services and these were both a blessing and challenging.
The concept of intersectionality was based on the struggles women of color had when they were fighting for women's rights with white women. Women of color realized the depths of their struggles as they faced the challenges of being women and women of color. The women of color exposed the various systems that were intertwined. Thus, living in systems that were intersecting. doing so, they exposed the interlocking systems that define women's lives. The theory of those systems became known as intersectionality, a term popularized by law professor Kimberle Crenshaw. In her 1991 article "Mapping the Margins," she explained how people who are "both women and people of color" are marginalized by "discourses that are shaped to respond to one [identity] or the other," rather than both. Intersectionality is further defined as the theory that the overlap of various social identities, as race, gender, sexuality, and class, contributes to the specific type of systemic oppression and discrimination experienced by an individual and further the oppression and discrimination resulting from the overlap of an individual's various social identities. This concept creates complications for individuals with intellectual and developmental disabilities who seek inclusion into society.
Naeem struggled as a young African American male trying to fit into society while dealing with some health and learning challenges. As his mom, I struggled with advocating for him and ensuring he received the right supports in school while reminding him how talented, smart and gifted he was. When I started A Better Life Together in 2005, I felt prepared advocate for the rights of individuals with intellectual and developmental disabilities because I had to constantly fight for him. I refused to allow Naeem to feel sorry for himself because he need extra time completing schoolwork. Naeem was expected to work hard like my other sons. He just had to take his medicine on time and accept the support he was afforded due to his Individual Education Program (IEP). As Naeem began to grow and mature, he focused less on his deficits and more on what he could do. There were times where some people tried to put him in a box due to his IEP, but he refused to accept others perception. I remember taking him and his brother to register for high school. We met with the guidance counselor who ironically from African. Mr. 0 spent a lot of time talking to Jaleni about college and his ideas about possible careers and assisted him in picking out classes.
Once Mr. 0 saw Naeem's records, he realized he had an IEP and called the special education teacher to his office and they began having a conversation about functional math and wood shop. I could sense that they only looked at Naeem through the eyes of his disability and not what he could achieve. I stopped them and asked Mr. 0 to have the same conversation with Naeem that he had with Jaleni. I told Mr. 0 that Naeem would not take functional math or woodshop and that he was going to college like his brother and should be treated as such. I could see the change in Naeem immediately and once we left school, I told him how much I believed in him and that no one was going to treat him any differently. Naeem excelled through high school and was determined not to need an IEP anymore. This meeting occurred in front of Mr. 0. After the meeting was over, Naeem said he was determined to prove him wrong. I had no idea that Naeem felt that way. He couldn't just be a student, he had to show Mr. 0 that he was as capable as his brother. After graduating high school, Naeem attended National University. He also was employed full time at our company supervising staff in our community-based day program. Naeem was a strong advocate for the people we support.
He passed away in 2016 and continues to be our motivation today.
Access and Inequality
As a mother of an African American with some would say disabilities, I had the ability and experience to advocate for his needs. I also was able to give him the tools to succeed in life and support to deal with life challenges.