On August 3, 2005, Access Press representatives attended a luncheon hosted by the University of Minnesota’s Institute on Community Integration (ICI). The luncheon was an opportunity for community leaders and organizations to learn more about each other. Three dynamic speakers shared their stories about family members and/or the experiences they have had in the U.S. related to disabilities.
The first speaker, Antoinetta Giovanni, an immigrant from East Africa, has a son with autism. She tells others within her culture not to give up when fighting for the services that a child with disabilities needs to be assimilated into life in America.
When her son was born, she didn’t know what a disability was or what autism was. She was in denial. As a single mother, where do you start to look for services? The school did not want her son and she was devastated, uncertain what to do. She was fortunate to connect with Arc Hennepin/Carver and they helped her understand that as a parent you have to educate yourself to get what your child needs.
Most immigrant communities are very protective of their children. Antoinetta was fortunate enough to hire someone from her cultural background to care for her son. This alleviated her fears of not having someone she trusted be alone with her son. Her son’s condition has improved immensely since receiving services and advocated for her son’s disability. When he was finally able to vocalize the word “Mommy,” she was very proud. Although he was unable to speak or verbalize any words up through the age of 7 or 8, at age 12, he can understand and verbalize some English. He even seems to understand when she and his caregiver speak in their native language.
Antoinetta achieved good support for her son, because she was willing to advocate and push for the services he needed. Arc Hennepin/Carver not only trained her to become to be an advocate, they also employed Antoinetta to help educate and inform other parents that they too, can be advocates for their children and get them the services they need. She helps parents understand that it is okay to ask for help for their disabled child. In America, and especially in Minnesota, there are social service programs to help disabled children of different cultures become independent and to live within society without barriers. Because many of these social service programs can be confusing to many with a language barrier, people like Antoinetta are invaluable in their role as a go-between for the service provider, the parent, and the person with a disability.
The second speaker to share her experiences was Grace. Grace has had different experiences in getting services for her two autistic sons, in part because of the ages of her sons—one is 18 the other is 26. When her boys were small, her husband divorced her because he blamed her for their children having autism. She had to educate herself and take courses to understand why her children had this disability. She felt that she was being punished for having children with autism. She had hurdles to overcome being from a different country and trying to advocate for herself and her children. It was difficult, because in her culture, vocalizing your needs is not appropriate.
PACER Center taught her that the parents are not responsible for the disability that their children have nor are they completely responsible for their children’s care. She struggled to get her sons the care and services they needed and often felt that she was being discriminated against. Was it because she did not feel that she deserved these services because of her belief that she should be punished because her children have a disability? Or is there discrimination from the social services programs where the employees feel that a person of color is less deserving? It is really a tough dilemma for many immigrant people with disabilities and these are some of the questions she raised in her speech that immigrants deal with.
The last speaker, Del Bahtuoh, came to the United States from Liberia when he was a teenager. Sometime after arriving in the U.S., he was injured and became disabled. When he lived in Liberia he had no exposure to or knowledge of any persons with a disability. After recovering from a bullet wound injury, he went into Courage Center for rehabilitation. Courage Center helped him learn about the resources he needed for his care. They also assisted in creating his IEP to helping complete his high school education and get enrolled into MCTC. After attending MCTC for one year, he transferred into the University of Minnesota. The Disability Services staff and the available resources at both colleges have been a great asset to Del. Even the students helped him in taking notes and the faculty allowed some flexibility with him taking tests.
Del came to America with only his father. When he became injured he was able to have his mother come here to help take care of him. Because of a certain CADI waiver, Del’s mother can work for him and get paid for providing the services that Del needs.
Access Press plans to continue working with ICI at the U of M and to maintain a dialogue with immigrant families who have members with a disability. If you would like to tell us your story, or if you can help us tap into the immigrant communities to help educate and inform them on how to advocate for the services they deserve and need, contact us at 651-644-2133 or by e-mail at access@testing.accesspress.org
