Meghan Hussey works at the crossroads of disability inclusion and international development, and her younger sister has autism. Learn about the personal and professional paths of her globetrotting, unique journey in autism awareness.
Tell us about yourself.
My name is Meghan Hussey and I’m currently International Field Director for Mosaic International, an international disability and international development organization. I’m also an autism sibling. I have never known life without autism or disability being part of it. My mother is a Special Education teacher and has been volunteering as a Special Olympics coach since she was in high school. Little did she know at that time that her second daughter, my younger sister, would have autism. My sister has classic autism and was nonverbal until she was ten years old. She is now 25, doing incredibly well, and is in a vocational training program.
How is autism awareness a part of your personal life and how has your perspective changed since childhood?
Autism awareness has always been a daily part of my life. In the early 1990s when my sister and I were little, there was not the type of autism awareness that there is today. At an early age, I got very good at trying to explain autism to my friends and have them be accepting of my sister. I apparently had good taste in friends, because I can’t think of an instance where someone wasn’t. However, strangers could be a different story. We got used to being stared at or even targeted with rude comments if Erin had a meltdown in a public place. What my mother always taught us was that “different is not less.” Erin was doing the best she could and we were doing the best we could to support her. If other people had a problem with us, it was their problem and not ours.
As an adult, I’m very open about the fact that my sister has autism. I often find that when people learn this they are interested and want to ask me questions about it. They may have heard something about autism in the media, but have never encountered someone with autism or an autism family member. I think I embrace these opportunities to open up a conversation about autism more now than when I was younger. Sometimes I will still get reactions like, “Oh I’m sorry!” As if I’ve told someone she has a terminal illness. I want them to know that my sister and I have a great relationship and how far she has come with love, understanding, support, and inclusion.
Now, disability advocacy is at the center of your professional life. What was your journey in this career path and did you face any challenges along the way?
Disability was never something that I anticipated doing in my professional life. In some way, it seemed to follow me. In college I volunteered in an autism support class at an urban elementary school in West Philadelphia, but I never considered doing anything with autism or disability as a career. I studied international relations and was interested in human rights and global health, but it wasn't until I studied abroad in China and I met a professor doing work on autism there that my personal background with disability and my international professional interests collided. As I got more involved in the disability NGO community in Beijing and did more research on international disability issues, I found that despite the overwhelming scale of the need, there are very few people and organizations working on these issues. I felt deeply that international autism and disability advocacy and programming was the work I was called to do and I have been doing this every since.
I think my biggest challenge initially was figuring out where to start. After I graduated I went back to China on a Fulbright scholarship and did research on programs for adolescents or young adults with autism or other developmental disabilities. After that I spent a year in Tanzania as an international fellow for Mosaic International, the organization I now work for, working at a small Tanzanian NGO that supports children and youth with intellectual/developmental disabilities and their families. Last year I got a Mitchell Scholarship to do my MSc in Global Health at Trinity College Dublin and did my thesis research on implementing the Convention on the Rights of Persons with Disabilities in South Africa. It has been an interesting road and each experience has helped me understand more about the barriers facing people with disabilities around the world and think about how to solve these complex problems.
What are some of the most eye-opening experiences you have had while working in Tanzania and in other global communities of people with intellectual/developmental disabilities?
I think one thing that struck me the most when I started doing disability work in low and middle-income countries was the complete lack services combined with an unbelievable amount of ignorance and social stigma. In China, I had parents of children with autism on several occasions tell me that at some point they had contemplated suicide. This was not because of their child, but because they were completely abandoned by their family and friends. They could not see a future for themselves or their child because there are so few options for autism therapy or special education there. In Tanzania many people believe that children with autism are cursed and may take them to see witch doctors. These attitude barriers are widespread among many different countries. They are also extremely difficult to overcome.
I think of all the support my sister had: the years of speech therapy, the access to other forms of communication, the one-on-one aide that made inclusive education possible, Special Olympics programs. For many of the people with disabilities I meet around the world, these types of services are a dream. I have met adults with autism who had never been to school or given an opportunity to learn. They had never had professionals who could help them learn how to communicate. Their parents lack both knowledge and resources, and so have mostly kept them at home for decades. Some are tied to a bed or locked in their room because there is no one to care for or supervise them. I think of all the lost potential and the structural injustice of it all and it both enrages me and breaks my heart.
On a more positive note, I will say what keeps me motivated is seeing that there are people out there who are dedicated to change. I have met some of the most courageous parent advocates in different countries. They believe in their children’s potential and right to be included in their community. They have seen what is available in places like the US and they are fighting to make that a reality for them as well.
What changes, resources, or solutions are needed at the crossroads of disability advocacy, international development, and global health?
One major challenge that I face is the idea that disability is somehow a “niche” issue in international development and global health. Foundations and large international development NGOs will say that disability is not one of their “focus areas.” I cannot tell you how often I hear statements like “Can we really expect low income countries to provide for children with disabilities when so many of the regular children are still suffering?” There needs to be a mindset shift that recognizes disability rights as human rights. I am baffled by how some organizations can say they work with the “world’s most vulnerable children” and yet have little or no inclusive programming for children with disabilities. Disability issues desperately need to be mainstreamed into the broader development agenda.
The other major thing that is needed is funding. There are wonderful international human rights mechanisms like the Convention on the Rights of Persons with Disabilities. Many countries have good disabilities laws on the books but they are never enforced. No resources are made available in countries to actually implement these policies and ensure human rights. Often it is not seen as a “good investment” because of a prevailing attitude that people with disabilities can never be contributing members of society, which is false.
As a disability inclusion advocate, what have been your most valuable support systems, mentors, or sources of inspiration?
My ultimate mentor is my mother. She works as a Special Education teacher during the day is an amazing support for my sisters and I at night, and then in whatever spare time she has she runs our local Special Olympics team. Her entire life has been devoted to helping people with intellectual/developmental disabilities reach their full potential and be included in their communities. I can only hope that I can have the same amount of drive and ability to make a difference in people’s lives as she does.
The other main role model I would say I have is Eunice Kennedy Shriver, sister to President John F. Kennedy and founder of Special Olympics. She had a sister with an intellectual disability at a time when there were no resources and incredible stigma in the US. After watching everything her sister went through and how it ended in lobotomy, Eunice became very active in bringing disability issues into the public conversation and policy agenda in a way that it had not been. Now Special Olympics reaches over 5 million athletes in 170 countries. As a sibling, I think of her as an example of just how powerful siblings can be.