HHAeXchange’s Demystifying Disability series was inspired by a fireside chat with Ellen and Emily Ladau, a mother-daughter duo who have the same physical disability – Larsen syndrome, a disorder that affects the development of bones throughout the body. In this first article, we hear from Ellen and Emily about their unique experiences living with Larsen syndrome and the impact homecare has had on their health and well-being.  

The disability landscape has changed significantly over the years. I’m curious to hear from both of you, what was it like when you were growing up?

Ellen Ladau: There are thirty years between Emily and I, and it was a very different experience for me growing up. For a period of time, I was the only visibly, physically disabled person in my school. It was a very isolating experience. Back then, there was no real attempt to integrate me into activities. I was always just the scorekeeper watching on the sidelines, never an active participant. I can happily report that for Emily, there was much more emphasis on adapting activities so she could be included as much as possible.

Emily Ladau: I think a lot of that has to do with the fact that my mom was born before the passage of the Americans with Disabilities Act, and I was born almost a year to the day after its passage. While the law is certainly not the only thing that has created shifts and we’re still very much in need of a lot of attitudinal changes, I think I’m very lucky to have been born into a world where there was so much more attention on the fight for inclusion, and I recognize that a lot of the rights that I enjoy are things that weren’t in place when my mom was growing up.

Ellen: For example, something as simple as ramps. When I was growing up, because there weren’t ramps for wheelchairs, you just didn’t see a lot of people with disabilities out in public.

Emily: While we’re still fighting for them in a lot of places, ramps are a form of access that have really become a mainstay, and I can get around a lot more easily than my mom could. I really do attribute that to the passage of time and the hard work of disability activists.

What is being done today that’s most exciting to you and how do you think it’s paving the way for future generations?

Emily: There has been an incredible amount of momentum building within younger generations and people with disabilities. Right now, we’re at a very exciting turning point for the disability community because people are able to connect with others who share their experience, and also with those who don’t share their experience so they can learn from them. Technology has presented a great opportunity for us to connect and it levels the playing field in so many ways. It’s given us the power to work from home, to enjoy social events from home, and so much more. So, what I’m most excited about is how the power of technology is driving connection and progress.

Ellen: We all know today that Zoom means this online platform that connects us. When I was growing up, Zoom was a TV show. One day I was flipping through TV Guide, and I was shocked to see an ad for the Zoom show featuring a young girl who had Larsen syndrome. In order to get in contact with her, I had to write a letter to the TV station in Boston, and the station had to contact her in California to see if she’d be willing to connect with me and my family.

Emily: I think that is incredibly exciting. Whereas my mom happened upon someone who looked like her, I can see people who look like me simply by going on the computer and engaging in conversation. And that’s really powerful.

Let’s talk about your experience with home care aides. What has it been like for you and how critical are homecare aides to your daily life?

Ellen: There have been times where Emily has had surgeries, and it was just too difficult for me to manage her recovery while my husband wasn’t home. When Emily was 17, she had major cervical spine surgery and was in a halo for about four months. Homecare was critical. This summer, Emily unfortunately took a fall and broke her leg and needed surgery, and again, we needed the help of homecare aides. Before I had homecare in place, Emily went to a nursing facility for a couple days. She was miserable, and the care was substandard. It just speaks to the importance of having care in the home.

Emily: We are both such big advocates for home and community-based services (HCBS). Without having access to care in a home environment, I think that we’re putting our physical and mental health in jeopardy. We’re not receiving access to what we need to thrive, to heal, and to get better. While the experiences that led me to needing home health care aides were both difficult, without having the home health care aides, those experiences would have been significantly more challenging and difficult for both of us, especially because we’re both disabled. It’s been so integral to my strength and functioning and just getting through day-to-day life.

Ellen, what has your experience been like in homecare?

Ellen: It’s coincidental that when I was pregnant with Emily, I was managing a homecare office. I was a home healthcare coordinator, and it’s just fascinating to me, now that I see the technology that HHAeXchange offers. My technology then was a pencil with an eraser, and a telephone. I didn’t even have a computer in my office.

Emily: It’s a testament to the fact that there’s been a societal push for understanding the value of homecare, and that’s what has led to these advancements. We realize that people thrive best in the environments that work for them. I’m lucky personally that my mom happened to work for a home health care agency because she already knew all the ins and outs.

Ellen: Prior to homecare I worked in health insurance, so I definitely have the skillset to be an advocate for Emily and I think that she learned a lot of her advocacy skills from watching me do a lot of yelling… gentle yelling.

Emily: In all seriousness, I think a lot of people look at us, a disabled mother-duo, and they think what a tragedy, how sad it must be. But for me, I just think how lucky I am to have been born to someone who has this built-in knowledge of disability, of home health care, of health insurance. I think I hit the jackpot.

Ellen: I hit the jackpot with you!

Stay tuned for part two of this important series next week! In the meantime, be sure to check out Emily’s book, Demystifying Disability, which just landed on NPR’s 2021 Books We Love List.