Pandemic stories: Meet advocate for families of children with disabilities Asha Abdullahi
This is the fourth installment of my Pandemic Stories series elevating the stories of women during this pandemic. Today, meet Asha Abdullahi, a mother of five children, one of whom is on the autism spectrum; a surgical technologist at Massachusetts General Hospital; a community organizer and educator; and the founder of a support agency for Somali families with children with disabilities (Somali Parents Advocacy Center for Education, or SPACE). In our email Q&A, she shares how the pandemic is impacting the communities she serves and how she longs to be able to sit and have tea with her parents again.
“
The families we serve
are struggling with access to education during remote instruction
.”
A few years ago, you received a fellowship from Boston Children's Hospital that dealt with reducing stigma for local Somali youth with intellectual and/or developmental disabilities. What led you to propose this project? And what do you think made you decide to take action, rather than simply observing the problem?
I remember how I felt when my child was first diagnosed with autism; I had no one to speak to and there was so much stigma involved. I also saw that due to the lack of education and understanding around disability and mental health diagnoses, many families waited past the critical period to get services for their children. I became committed to helping other families avert the pain and suffering my own family experienced, and so began volunteering in the community. There were no other organizations focused on Somali families with disabilities, so I started a parent support group. I wanted to change these patterns and be a broker to help families access services, and to make our community a more inclusive space for people with disabilities.
What has been the most satisfying outcome you've seen so far from your fellowship project? And what goal is next on the horizon?
The most significant outcome has been more families openly talking about disability and participating in the community. Currently, SPACE has provided some degree of services to approximately 200 families, which has had a cascade effect on the community at large. I have seen quite a few families of children with disabilities who went through my workshops receive the services they deserve by seeking out early diagnoses. It has also been incredibly touching to see parents be able to better advocate for their children and not allow their children to be treated as secondhand citizens by our Somali community or beyond. My next goal is to expand our organization and reach more families in the community, and become entrenched as a recognized source of information and education for Somali families.
How has the pandemic affected the children and families your project serves?
They are struggling with access to education during remote instruction due to: a) expecting parents to teach their children, especially those with disabilities who need specialized instruction; b) regression in academics and behavior because of the lack of specialized instruction and services; and c) parents needing to access technology for home-based learning.
How has the pandemic affected you and your family most directly?
I am lucky to have children who are all older and have adjusted fairly well to our new normal. The hardest part has been feeling isolated from the community. I worry a lot about my elderly parents, who I had to stop visiting due to being a frontline worker. It was really hard in the beginning; I kept worrying I would bring the virus home to my family. So far, so good, though.
Paint a picture for us of what your daily life looks like these days. For example, what can you see or hear out your window right now? What is your daily routine, if you have one?
I work part of my week at the hospital. The rest of the week I am on Zoom with the families I serve. I spend a lot of time contacting education and healthcare providers that the parents need to be connected with. Outside of my work, I make sure to drop by my parents’ house and have socially distant visits with them.
Are you quarantining alone, or with others? What benefits do you see in your situation, and what's hard about it?
I am quarantining with my four boys and husband. As a frontline worker, I work at the hospital two days a week. The rest of the time, we’re home together. We eat together more often, we have lively discussions, and we are generally enjoying each other’s company.
What are you most looking forward to doing when the pandemic is over?
I am most looking forward to having in-person workshops again, being able to attend community events, and being able to socialize. I cannot wait to be able to safely go over and have tea with the parents in my community again. I will deeply appreciate those moments.
(Shout-out to Michelle Hynes, who introduced me to Asha and suggested I interview her. Michelle is a coach and consultant who helps leaders and teams navigate change…gee, if only that were a relevant service offering in 2020...)
Explore more women’s stories:
Subscribe to my monthly newsletter, Mighty Forces 3-2-1. You’ll get 3 things to know about women’s stories and power, 2 women’s stories, and 1 inspiring quote.
