We spoke to Sue Swenson, a disability rights advocate in the United States. She is currently the President of Inclusion International, an organisation that represents the interests of people with intellectual disabilities and their families globally. Her story is a strong reminder of how family support within the community can empower people with disabilities and their families to lead the lives they want to live.

Sue takes us back to the beginning, when one of her three sons, Charlie, was born with multiple disabilities and her family had minimal State support. Today, she is known in the disability movement as an advocate and a mother who fought for inclusion. Read Sue’s full interview to get to know her impactful journey.

You are a compelling voice in disability advocacy in the US. How did it all start?

Sue: By discovering inclusive education. My son Charlie was 15 months old when he was diagnosed with complex and profound disabilities. I was told by doctors to put him in an institution. We loved him too much to do that to him. So, with the limited resources available in Minnesota, I tried to make sure my son had a good life.

That’s how it all started.

Charlie sat in segregated classrooms and was never happy at school. One day I asked my other son’s teacher if Charlie could join her class for story time. In no time, he was sitting for almost all classes. The students loved him. He learnt how to trust the right people and make friends. Segregation cannot teach you this. I credit inclusive education to give my son a real chance at living in a community.

We pushed for inclusive education so much that segregated classrooms were shut down in Charlie’s school. All students with disabilities were fully integrated into mainstream classes. My son’s inclusive education journey became his whole school’s journey.

Eventually, I went on to advocate for family support for children with disabilities at the state level and continued disability rights advocacy at the White House during Obama and then Biden’s administration.

How important is shared responsibility in a community to support people with disabilities?

Sue: In a strong community, you can always assume to be seen and heard. That’s the power of living in a community. When I started working at the state legislature on advocating for inclusive education, it was my neighbours, Charlie’s school and my family's support that let me do it. Especially my husband who held the fort while I studied and pursued policy to further my advocacy work.

It was their shared responsibility that made them conscious to support me in challenging times.

Unfortunately, many parents don't see it that way. They are fearful of community. They don’t trust that this community will be able to support their children with disabilities, once they are gone. I hope people can change this mentality.

I strongly believe that being part of a community is the best protection a parent can give to their children with disabilities.

What support did Charlie’s siblings need growing up?

Sue: My other two sons, Eric and Will, had a different childhood from their peers. They couldn’t just come home after school and watch TV or play football. They often changed Charlie’s diapers and took care of him. My husband and I fully supported my children through this.

By seeing Charlie study in the same school as them, my sons grew up with an inclusive worldview. They have responsibility and sensitivity rooted in their personality. We became stronger as a family through this.

At the age of 11, Eric gave a testimony at the Maryland Legislature on the importance of family support. He spoke up in front of all those senators and they passed the family support law! Today, he is a lawyer and does public interest law and pro bono work for people with limited access to resources. My other son, Will, works in policy communications. Another very important aspect of advocacy.

Their childhood shaped their future of becoming responsible citizens of a community and I am very proud of my sons!

What is your biggest learning from being a disability rights advocate?

Sue: Money doesn’t solve all problems. If you want to change culture, regulations and funding streams won’t get you there – behavioural change will. I spoke to many mothers of children with disabilities. The most common belief among them is that buying more services automatically meant better lives for their children with disabilities.

But this is far from the truth.

To achieve freedom, there are a certain number of services that you need to purchase. But once that freedom is achieved, more staff and service providers can restrict your freedom. Charlie had two support persons, round the clock. Towards the end of his life, we didn’t need two people. They were disrupting his routine and disturbing him. So, when I reached out to the health insurance programme to remove night support for Charlie, they refused! They kept telling me that it was required due to his complex disabilities. They never asked what Charlie needed.

From the beginning, I tried to limit his expenses to under 100,000 US dollars a year, because I knew family support was not available in abundance. Many people did not have access to it. If they had agreed to remove Charlie’s night support, someone else on the waiting list could have received 8 hours of support to live their life.

I wanted my son to live simple so others could simply live. That was my responsibility towards other families in our community.

Sue Swenson's story doesn't end here. This October, Sue will open our Empowering Families conference in Turin, with a more in-depth narration of her journey of fighting for family support.

Know more about our Turin Conference.