Middle East and North Africa
As a technical advisor on disability rights, Karen Saba works with several non-governmental organizations (NGOs) and international organizations from around the world. She has worked on several topics related to disability rights such as education and political participation, and she primarily works within the Middle East and North Africa region. In this interview, she talks about political participation has affected her life, accommodations in the voting process, and her previous work in South Africa and Iraq. Though a native of Egypt, she currently resides in the United States.
As an Egyptian woman with a disability living in the United States, how has political participation had an impact on your life?
Well, I am an Egyptian native with a deep disdain for inequality which is rooted in my own experience of having cerebral palsy, a neuromuscular disorder that slurs my speech and slows my gait. When I was 11, my family moved to the U.S. so I could receive better medical care and have a chance to go to college, land a good job and become self-sufficient — none of which my parents thought was possible for a disabled girl in Egypt, and they were probably right. Not many countries in the Middle East engage people with disabilities in political reforms. Yes, most countries in the Middle East try their best in ensuring people with disabilities have the necessary accommodation to vote, but political participation is more than that.
Political participation is about involving the stakeholders in developing laws, implementing regulations and monitoring the success of these laws and regulations. Since I have access to political participation, I feel that my rights cannot be taken away from me. In the U.S. there are several laws that pertain to the rights of people with disabilities. Most of these legislations were developed through coalitions of DPOs. In addition, each jurisdiction has a commission that oversees how local governments are implementing these policies. For example, in the last election my state used new voting machines. Prior to selecting these machines, people with disabilities were asked to examine them and make sure that the system was accessible. They were given a stipend for their input. A budget was set aside to ensure accessibility. Only after receiving input from people with disabilities did the governor make the decision to use these new voting machines. Unfortunately, disabled people in Egypt and across the Middle East are often isolated and do not collaborate in such political reforms.
When exercising your right to vote, have you ever encountered any challenges? Is there any accommodation or design that could be provided to make it easier for you or others with disabilities to vote in the United States?
Because I drive, walk and have enough control in my hands, I don’t need much in terms of accommodation and support. By law, election venues have to be accessible, meaning people who are deaf, blind or physically disabled can have the opportunity to vote independently. There was one year where the polling line was too long, I think it was over 2 hours long. I could not stand that long; fortunately, the poll workers made an exception. They moved me to a special line where I had the VIP treatment and I avoided waiting in line for 2 hours. In general, not just in the U.S., if persons with disabilities are able to convey their needs for accommodation or support, they will usually get it, whether through formal accommodation such as a ramp on the sidewalk or in an informal way by asking for help. Unfortunately, many people with disability, in the US and around the world, are too proud or embarrassed to ask for help. Other times people with disabilities don’t know what type of accommodation and support they need. Self- advocacy is a very important component of systems change and political reforms. People with disabilities need to be articulate in asking for accommodation and support; after all, it is their right.
Would you tell us a little bit about your previous work to support persons with disabilities in exercising their political rights? What laws or tools did you use to share information?
I started my career working in the disability field while pursuing a master’s degree in international development from American University in Washington, D.C. As part of my graduate work, I traveled to South Africa to examine the educational system post-apartheid. My field research focused on the educational system for children with special needs. I saw firsthand how the apartheid economy was manipulated to benefit a few. Public social services programs that benefited people with disabilities were virtually nonexistent. Most social services that existed were privatized and not affordable to the average black family. This trip made me recognize that responding to the needs of the marginalized, including those with disabilities, requires a solution that targets the complex social problems in the community, including economic inequality and political reforms.
After graduating, I ended up working in Iraq and the Iraqi crisis developing and implementing inclusive humanitarian programs for people with disabilities. Today, as a technical advisor on disability for many international projects and with many NGOs (including IFES), I usually use the UN Convention on the Rights of People with Disabilities to develop tool kits and training to help people with disabilities understand their rights under various articles. My focus is to develop self-help groups and DPOs. When technical assistance is lacking, as is the case in many of the countries I worked in, self-help groups, peer support groups or DPOs can be just as effective or perhaps more valuable in identifying problems and creating practical solutions to make “system change”. Through peer-support mechanisms, individuals can help reform all types of programs. The value placed on peer support in empowering people with disabilities and creating political reforms is paramount and unique, and the significance of a system that values the peer-to-peer relationship is often overlooked by a society that is accustomed to valuing the opinion of professionals and ‘experts’ over the goals and needs of the beneficiaries. As a result, our self-help initiative led to the establishment of the Iraqi Alliance of Disabled Organizations (IADO); today the organization is very strong and still advocating for the rights of people with disabilities. The self-help and peer support model needs to become more prevalent globally.
Image credits: Karen Saba