“I’m committed to policy-making that improves the lives of people with disabilities,” says Hannah Orban, an advocate, public policy specialist, and Fulbright scholar from Sydney, Australia. “We have to redouble our efforts to dismantle disabling attitudes. People with disabilities have been fighting tooth and nail for far too long.” For Hannah, these issues are personal: two of her brothers have Fragile X Syndrome, and she grew up watching their exclusion from mainstream society. Today, she’s a master’s student at the University of Michigan, but still makes time to volunteer with the local Best Buddies program and mentoring community members with developmental disabilities.
Itto Outini: Where does your passion for your work come from?
Hannah Orban: My eldest and youngest brothers were born with Fragile X syndrome, a genetic condition that causes cognitive impairments and developmental disabilities. My eldest brother has a more severe case. My youngest brother’s is milder. My older brother, Joshua, and I don’t have it at all. Joshua is a political science PhD student at the University of Michigan, and he’s dedicated to research in disability studies as well. His research looks at public attitudes toward people with disabilities and how people with disabilities engage with politics. Just witnessing that variation within my own family taught me from a very young age that opportunities aren’t fairly distributed and life is decidedly unequal.
Itto: Are you close with your brothers?
Hannah: (laughs) Of course! They’re my best friends. They’re the light of my eyes. We’ve always had that unique sibling bond of shared experience and understanding.
Itto: When you were a kid, how did their disabilities impact your life and the dynamics within your family?
Hannah: I got to see firsthand what it’s like to live on the outskirts of society. I witnessed how they were misunderstood and bullied at school and at times prevented from joining the social circles they wanted to join. Basically, they were informally segregated. Once, for example, when I was in primary school and my younger brother was in a mainstream class, I went to pick him up, and one of his classmates came out to tell me all the things he’d done wrong that day and how embarrassing he’d been. I remember feeling trapped, and mortified, and really, really sad, but also furious on my brother’s behalf because this person, who was only a child himself, was judging him, and that contributed to my brother’s feeling of alienation at school.
Itto: Did it impact your social life, too?
Hannah: Yes and no. When I was very young, I worried about needing to explain my brothers to my friends. I felt like I needed to stand between my brothers and the world. Any threat of alienation or difference is scary to children, so this made me nervous sometimes. I worried that my friends wouldn’t understand them, or they would think we were strange. But as I grew older, I realized I’m not standing in front of my brothers, trying to shelter them from the world. I’m shoulder-to-shoulder with them. Also, I decided I didn’t really care if people formed negative opinions of them because they have disabilities. That’s an absurd reason to form a negative opinion of anyone.
Itto: What about now? Have things gotten any better? Can you describe your brothers’ daily lives?
Hannah: Yes, things have definitely gotten better. My eldest brother lives in a group home with two other flatmates who also have intellectual disabilities. He loves it there: being independent, and having his own space, and how it makes coming home to visit the family more special. He swims and plays sports and goes to the gym. My youngest brother also has fragile X, but to a lesser degree. He lives with my family in Sydney. He works as a receptionist, and he’s taking classes at a community college, and he also loves cooking. We have a couple of social workers whom he really likes, and sometimes they all go to the gym together.
Itto: What about their relationships with your parents?
Hannah: My parents love all of us equally. They’ve always been clear and consistent about that. Sometimes, it causes them grief to know that Tom and Hamish–those are my brothers with Fragile X–face so many difficulties and limitations. But they’re also hopeful for the future. In Australia, there’s a new program called the National Disability Insurance Scheme (NDIS), which supports people with lifelong disabilities who want to live independently and pursue their own interests and professions. It’s had a really positive impact on our family. For 30 years, my parents couldn’t leave the house together. One of them always had to be there with my brothers. Now, thanks to that program, they can go on dates again and do things with each other, and my brothers get to live independently. It’s transformed all of our lives.
Itto: What do you think family members can do to support and advocate for persons with disabilities?
Hannah: We’re in a unique position because we know how important our loved ones are, and what they’re capable of, and all the joy and value they can bring to the world if only they can access opportunities. I guess you can say we’re the ones who are motivated. We can advocate for them, and maybe more importantly, we can listen to them. Honestly, though, it’s not just our responsibility. It’s everyone’s.
Itto: I agree! Especially since there are people like me, with disabilities and no families to support us. Society has to play a role, too.
Hannah: Exactly. Disability is something we all interact with at some point, directly or indirectly. It’s a category that encapsulates a huge cohort of society, and one that’s constantly changing. It might not happen to everyone, but it can happen to anyone. It can be visible or invisible. The social model really underscores that there’s a difference between an impairment and a disability, and that a disability is largely something society or the environment imposes on people, not something internal. So, within that framework, it’s the responsibility of society as a whole to dismantle those disabling attitudes and create environments and systems that are more inclusive for everyone. Policy is a cornerstone, but in a free society, it’s beholden on all of us to live inclusively.
Itto: Would you apply that to the media, too?
Hannah: Absolutely. I think people in the media are finally starting to recognize some of the mistakes they’ve made, how they’ve been promoting disabling stereotypes and stigmatizing or omitting people with disabilities entirely. There also seems to be a broader cultural effort underway to promote better media representations. But of course, there’s a long way to go.
Itto: That’s a good segue into your work in public policy. Can you talk about the work you did in Australia?
Hannah: Of course. Like I said, growing up with Tom and Hamish taught me that opportunities aren’t distributed equally, and that motivated me to embrace whatever opportunities came my way and make the most of them. I studied philosophy as an undergrad and loved it because it taught me to listen carefully and think critically, but after that, I wanted to do something less abstract and more applied. I went into public service in New South Wales and joined the Department of Education’s disability strategy team, and we worked on all sorts of programs for students with disabilities in public schools. I redesigned a survey to help teachers recognize their students’ capabilities. I also designed a pilot program to train teachers to better support students with disabilities, and to connect those teachers with their fellow educators in different types of educational settings. This work really emphasized to me the impact that public policy has on people’s lives. Eventually, I decided to go back to school so I could become a better policymaker and a better public servant.
Itto: You’re studying on a Fulbright scholarship, right? Do you think there are opportunities within the Fulbright Program for persons with disabilities?
Hannah: The Fulbright Program’s all about leadership, diversity and mutual understanding, so yes, I think it represents a wonderful opportunity for people to reshape societies and transform their own lives. I’m excited to be part of the community, and I want to promote it more among people with disabilities. I think Fulbright is committed to an equitable and inclusive future.
Itto: Can you talk a little more about the current policies in Australia and the US, and how they affect persons with disabilities?
Hannah: The current policies are many and varied. Part of my research is to identify what works and what doesn’t through comparative studies. In the US, there’s the ADA, which has been a really successful piece of legislation, but hasn’t achieved much in terms of helping people with disabilities find jobs and stay employed.
Itto: Can you elaborate on that?
Hannah: The literature seems to suggest that the ADA’s anti-discrimination approach has been too narrow to effect the change we need for people with disabilities to enjoy the whole and unencumbered equality they deserve. In the case of employment accommodations, the ADA’s anti-discrimination model calls for the righting of wrongful discrimination, but it doesn’t stipulate that employers are obliged to provide employees with disabilities with all the tools and resources they need to fully participate in the workplace. For example, it’s not the employer’s responsibility to make sure their employees can get to work on time, regardless of the obstacles they’re facing. The way the ADA’s interpreted, no one really has that obligation, so quite often no one does it.
Itto: How would you compare the ADA to other approaches?
Hannah: That’s another big part of my research: looking at comparable models in Australia. The NDIS adopts a bio-psycho-social model of disability, which synthesizes the medical and social models, so it’s a little different from the ADA. I’m really interested to see how it’s going to work. I also want to identify for whom and under what circumstances the anti-discrimination approach works well, and when alternative approaches will gain better outcomes. These issues are complex, and so is the legislation, and there are lots of little moving parts and pieces that might not seem all that important at first glance, but they end up having a huge impact on the outcomes. The NDIS is still quite recent, so we’re all waiting with bated breath to find out whether it really helps people with disabilities achieve what they want to achieve.
Itto: What’s your focus as a policymaker? What do you personally want to achieve?
Hannah: I’m focused on the social side of disability policy, rather than the health side. I’m interested in how we can improve education and employment for people with disabilities so they can fully participate in society and become economically independent and socially equal. My long-term goal is to work alongside people with disabilities to produce excellent public policies that help them access all the opportunities they deserve and achieve what they want to achieve.