By Emily Medders Bittner (mother of Sascha Bittner, and one of her home care providers)

Today, July 26th, we celebrate the 35th anniversary of the passage of the Americans with Disabilities Act (ADA)—a watershed moment in the disability rights movement, when disabled Americans were finally recognized as full citizens under the law. This is also a day for me to personally reflect on the enormous progress made in access and inclusion for disabled people during my own lifetime and in that of my daughter, Sascha.

Six months after she was born in 1973 (when I was a single, teenage mom), Sascha was diagnosed with cerebral palsy, which in her case, means she is unable to walk and has a speech impairment, in addition to limited hand use. At the time she was diagnosed, expectations for people with disabilities were very low, early intervention was almost non-existent, and I was told she’d never be able to do much of anything. My own mother initially suggested I place Sascha in an institution, which was where disabled Americans had long been warehoused in often deplorable conditions­–out of sight and invisible to the rest of society. Back then, I had very little knowledge about disabilities, but I rejected the low expectations for Sascha from purported “experts,” and I was determined to help her reach her full potential, whatever that might look like. At the same time, I still saw disability as mainly a medical condition. I didn’t have any role models or examples for how someone with a speech disability, who couldn’t walk or take herself to the bathroom by herself, could live a full and independent life. For a while, I actually thought I was failing her by not finding some kind of cure.

Emily and Sascha in the late 1970s.

Thankfully, when Sascha was six, I moved to San Francisco, and although I didn’t know it yet, activists in the Bay Area, inspired by the civil rights movement for racial equality, were at the forefront of the growing disability rights and independent living movements. As I became exposed to these trailblazers over the years, I began to see disability as more of a civil rights and human rights issue than a medical one, and Sascha and I both became involved in this struggle. To my surprise and relief, we met many activists who were quadriplegic with speech disabilities, like Sascha, yet still managed to live very productive and satisfying lives. I discovered the essential element I hadn’t previously envisioned was the home care support that enabled them to live full and integrated lives in their communities, instead of segregated in large institutions or nursing homes, the fate I most feared for Sascha. After I learned home care support was an essential component of independent living, I was finally able to imagine a fulfilling, inclusive future for Sascha that didn’t first require “fixing” her.

In the twenty years before the ADA was enacted, disabled people, family members and allies fought to get other critical legislation passed to ensure access and inclusion, but the ADA was far more sweeping, and applied not only to federally funded entities, but private businesses and institutions, too. As a result, the day it was signed–July 26–is now referred to as National Disability Independence Day. In 1990, Sascha (then 17-years-old) was one of the ecstatic, cheering audience members at the Center for Independent Living in Berkeley, watching President Bush sign the Americans with Disabilities Act into law during a televised ceremony.

Emily and Sascha (plus Emily's two younger children) at a protest in San Francisco.

While home care was not covered by the ADA, for the promise of disability independence to be realized, that support is essential. Accessibility, accommodations and inclusion are critical, but without home care support, many disabled people would still be unable to live self-determined lives or to fully participate in their communities. Recognizing the invaluable assistance provided by these workers, in 2011, Sascha joined an organization, Hand in Hand, the Domestic Employers Network, to advocate for the rights of home care providers and other domestic workers. As we learned more about the domestic workers rights movement, we began to see the strong connection with disability rights, and to realize that home care providers and disabled people share similar goals—to be seen and appreciated, to be treated with dignity and respect, and to secure full human rights.

Domestic workers have long been denied the labor protections afforded other American workers, while their essential work has been egregiously undervalued. They are the workers who make other work possible (as they clean our homes, tend to our children, and take care of our elderly and disabled members), but they are rarely recognized or adequately compensated for their contributions. As Sascha and I contemplated the indispensable nature of home care support, we began to refer to “interdependent” (rather than independent) living, in recognition of the reality that we are all in this together, and self-determination doesn’t mean going it alone.

Sascha lobbying.

As Sascha became more involved in this movement, she met Ai-Jen Poo, the director of Caring Across Generations, the president of the National Domestic Workers Alliance, and the author of The Age of Dignity: Preparing for the Elder Boom in a Changing America. Poo, inspired by the disability rights movement, has been at the forefront of the domestic workers rights movement, and warns of a dire shortage of home care providers (which we are already experiencing), given the dramatically increasing need for their support by aging Baby Boomers, combined with a scarcity of younger people in the labor force to provide that support. Our current long-term care policies are woefully inadequate to meet this moment, so Poo proposes a massive effort, both public and private (rivaling infrastructure investments like the national highway system), to develop a comprehensive “Care Grid” to address this challenge. She also envisions a national campaign to promote the value of caregiving, and to create a new caregiving system that enables seniors to age with dignity, while care providers also flourish. (Given the increasing shortage, we also need expedited work visas and paths to citizenship to help recruit and retain workers.) Although recent setbacks in these efforts are discouraging, the need for home care is an issue that should transcend politics, and we must continue to work to find a way forward.

Again, on this Disability Independence Day, when I look back, I see tremendous progress, and on a scale I never could have imagined. In the beginning of our time in San Francisco, I had to carry Sascha in my arms on the inaccessible streetcar, while today there is a ramped platform just three blocks from our house. Our neighborhood now has yellow curb cuts at every corner, so Sascha no longer has to risk her life driving her wheelchair on the street. She can eat in virtually any restaurant, and enjoy movies, museums, concerts and plays that once would have been completely inaccessible to her. Even Uber and Lyft now offer accessible vehicles. More importantly, today I would not have to fight so hard and long to get Sascha included in general education. (She was stuck in a special education class until 6th grade, yet later graduated from UC Berkeley.) Thankfully, I also see many more disabled people out in the world, on television and in movies, living productive and satisfying lives, which is a sea change from my own childhood, when they were locked away in institutions or attending segregated schools. In fact, Sascha, the child who I was told  would "never be able to do much of anything," was recently honored by the San Francisco Board of Supervisors (in conjunction with the anniversary of the ADA) for her lifelong leadership roles in disability, elder and domestic workers rights, in addition to her numerous other contributions at the local, state and national levels.

Sascha being honored by the Board of Supervisors in San Francisco (left) and with Kamala Harris (right).

At the same time, we still have a long way to go in order to fully realize the promise of the disability rights movement, and need to address structural and systemic barriers that undermine that objective. As always, attitudes are often the hardest barriers to overcome, including damaging stereotypes about disability and aging. We must continue to challenge those ableist and ageist narratives, and to recognize elderly and disabled people as valued members of our communities who deserve inclusion, dignity, respect, compassion and the right to self-determination.

Finally, when Sascha was first diagnosed, I knew nothing about the invaluable contributions of home care workers and the absolutely pivotal role they would play in her life and the lives of so many others. These workers also deserve dignity and respect, in addition to fair compensation, labor protections, good working conditions  and our deep appreciation. As we move forward, we need to remain mindful that the lives and fates of disabled people (young and old) are profoundly connected with those of home care workers.

We are stronger together, and together we rise.