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 final article in the series, Ellen and Emily provide clarity on common misconceptions about disabilities, and note some of the greatest contributions people with disabilities can bring to society.
We’ve talked a lot about helping those with disabilities. But how do you see people with disabilities helping others?
Emily Ladau: I am so happy to flip the script on this conversation. There’s this misunderstanding that having a disability means that you are helpless, and that you are not able to provide support for other people. It doesn’t matter whether you have a cognitive disability, a physical disability, or a mental health disability, you are a human being who can provide support for someone else.
Although my mother and I are both wheelchair users, we help each other constantly. My dad is the one who is not physically disabled, but many times we have to help him, too. We have found so many ways to support each other, whether it’s by providing emotional support, or it’s me putting on my mom’s shoes, or her putting on my socks, or helping each other pick something up off the floor. We have found a dynamic that works for us. We’re always helping each other, and I think we need to recognize that as human beings, we can all find ways to do that.
Ellen Ladau: My husband is sometimes referred to as “Saint Mark”, and we are seen as the burdens to him. I think there needs to be recognition of all we do for him. I’m the house manager, the bill payer, the scheduler, the cook, the cleaner, the laundress. How would he manage without all those supports?
If you could change one myth or misconception about people with disabilities, what would it be?
Emily: I wish I could make a whole list. But if I had to change one misconception it would be the belief that people with disabilities can’t be full and equal members of society. I think that we have these expectations that you have to do certain things in order to be defined as living a full life. You have to go to school, have a relationship, get a job, get married, have children… We have all these standards and ideas of what it means to live a full life and we don’t realize that no matter what kind of life you’re living, and no matter what your disability may or may not be, you can still live a full life. It doesn’t have to look like anyone else’s definition of a full life; you are still a full and equal human being. You still have the right to full participation in society, to communicate in whatever way works best for you. I really wish that we would do away with this idea that being disabled means you can’t live a full life.
Ellen: To augment Emily’s point, there may be so many people around you that have disabilities that are contributing and you’re just not aware of it because their disability is not a visible one. They could have an illness or a mental health disability, so you can’t make assumptions about people. It’s like when you see a person using a handicap parking space, and they have the placard… people might think, wow that person doesn’t look disabled, why are they taking that spot? A lot of times you just don’t know.
Emily: You cannot look at someone and necessarily determine anything about their disability status. And no one owes you their story. As much as I’m a big believer in storytelling and communication, not everyone owes you that.
What is your favorite technology you use every day?
Emily: I’m going to say my wheelchair because I think that people look at wheelchairs as binding, as confining, as something that is so sad that someone needs to be in. But I have always argued that my wheelchair is my freedom, without it I wouldn’t be able to move around the world, so I think that the invention of the wheelchair is honestly the best technology there is when it comes to moving around for me.
What are the main goals you’d like to accomplish over the next year or so?
Emily: My biggest goal is to keep doing what I’m doing, to keep scaling, growing, and connecting with more people. I’m of the belief that if you connect with one person and you change one mind at a time, you’re still having a ripple effect and you’re still making a difference. If in a year from now what I’ve accomplished is that I’ve reached more people, that will absolutely be achieving my goal.
Ellen: I hope to support Emily. I’m sort of the behind scenes “momager”, as the Kardashians say. I want her message to reach as large of an audience as possible. And my message – that it is possible to be a disabled parent. There’s a belief out there that people with disabilities can’t be parents, and in some cases, children are taken away from disabled parents. So there’s a whole breadth of knowledge about disability experience that people need to know about.
In regards to home healthcare, is there anything in particular you feel still needs work, with government, with accessibility, or with technology? What would be the one thing in the short term that you hope we can get right?
Ellen: I think that pay for homecare providers is a big issue and if caregivers don’t have adequate pay, then they can’t afford reliable transportation. That is an area that really needs to be addressed on a national level.
Emily: Yes, equitable pay! Home health care providers do so much to make life better for so many people. They deserve equitable pay. For me, my focus is really on policy and the fact that home and community-based services (HCBS) are a huge part of federal ongoing conversations right now in terms of funding provisions, and I hope that we continue to push in the right direction to ensure that we have the proper funding to keep providing services based in the home so that people don’t have to go into nursing facilities.
Do you have any recommended resources for those who are unsure of how to advocate for themselves, especially in professional settings?
Emily: It really helps to have the tools and the knowledge in place that you need to explain why you might need a certain accommodation, or to disclose your disability in a way that feels safe and comfortable for you. A lot of that has to do with being in a workplace culture where you feel comfortable being your full self and bringing your full self to work. But at the same time, a lot of it is just about having the information you need. Two resources that I really like are the job accommodations network (askjan.org). I also really like the employer assistance and resource network on disability inclusion, which has a ton of resources for employers and employees to talk about the accommodations and ways to make workplaces more inclusive.
There’s this misconception that accommodations are very expensive, but most can be done for little or no cost and are just about making the workplace more effective to be the most productive employee you can be. And if you’re looking for information on the ADA, there’s also the ADA technical assistance network, which is a really great resource. There’s a lot out there and when you arm yourself with that information, that’s how you begin to become your own best advocate.
What can we, as a society, do to be better advocates?
Emily: The caveat that I always give is that I am one person and Demystifying Disability is one book and my hope is that it will be a starting point on your journey to learning about disability. My hope is that you continue learning and growing and that you recognize that the disability experience encompasses a population of 1.3 billion people worldwide, and my mother and I are two of those people and can’t speak to every experience, but what we can do is offer a starting point to enter into these conversations and to feel more comfortable having these kinds of dialogues.