Caregiving Series Part 2: Living the Caregiving Crisis of Today
For the second post in my three-part series focusing on caregiving I wanted to sit down and talk with a disabled woman who is currently living through the caregiving crisis of today. Ligia Andrade-Zuniga’s life got turned upside down—literally— when 12 years ago the mini-van she was driving flipped over. The accident broke her neck, leaving her a quadriplegic. We got to know each other through our disability advocacy work. In the years since the accident, she has raised two boys, both now in college, pursued her career in policy advocacy work, public speaking, and was most recently elected to the San Mateo Unified School District Board of Trustees.
Jody: Thank you so much for sitting down to talk to me today about what I consider to truly be a caregiving crisis in this country right now. But let’s back up a little bit. What do you think is the biggest misconception people have about caregiving?
Ligia: I think there are three main misconceptions. The first is that people think we are just afforded care, regardless of our access to it. For example, I have a disability that requires me to have someone to help me, right? Sometimes people think that the government just automatically sends a caregiver or that there is a robust workforce that wants to work with us. A second misconception is that it is easy to find care. And that when we can’t find care, it is somehow our fault. The third misconception is that care affordable for the person needing it, and on the other side, that the worker is being paid proportionally to the work they are doing. So, with the In-Home Support Services program, for example, there's no tiered system of pay. I want everyone to earn a fair wage, but someone hired to do higher skilled personal care is not the same as someone hired to run errands. Experience matters.
J: Do you find fractures or inequities within the disability community itself? I imagine there are disabled folks who need more care than others, but those needing more care aren’t always heard or acknowledged. Same goes for some people with more financial resources than others.
L: Yes, absolutely. And it is frustrating. Not all disabled people are the same, and some need more support, and some can do a lot for themselves. But this separation hurts us all. It hurts the accessibility of care for everyone. In San Mateo County, where I live, is one of the wealthiest counties in California. But it's also one of the most aging counties. So, we have a lot of people who have retirements and financial assets and might be able to pay like $50 bucks an hour to have someone be a companion, which then hurts us because some of us really do need someone to come and work.
J: Expanding on that a bit, I can kind of see the chasm between disabled population and elderly people, because, quite frankly, a lot of elderly people don't even think of themselves as disabled, even if they have disabling conditions. And within the disability community itself, for example, how do you have constructive conversations with other paraplegics or, say, invisible disabilities, to say “hey, you should get this?”
L: It can be hard to those conversations sometimes because people don't understand each other, depending on, again, how you were raised, what your understanding of disability is, and what kind of information you have access to. But at the end of the day, we are all human beings. And we are often fighting for the same things, like access to resources and the $400 billion for caregiving in the infrastructure legislation currently being debated in Congress. So sometimes it's better to just work together.
J: I think part of the issue in getting people to understand the challenge of having the financial resources to pay for caregiving is that we live in a world where a) people think they will never need a caregiver, b) the discrimination that exists for employing disabled people, and c) general ableism.
L: Most people, disabled or not don’t understand how expensive care is. Especially if you are a person needing daily care. The reality for a lot of disabled people is their circumstance doesn’t give them those options. Maybe we don't have a retirement account or some sort of trust. Maybe we are working but we're not at that level yet of having anything like long-term disability insurance, or an ability to put extra savings aside. And with ableism, you are right. People disabled from birth have faced discrimination in education, employment, and maybe even healthcare. It is hard to have access to resources like consistent quality affordable caregiving when you are fighting so many battles already.
J: My next question is about the COVID-19 Global Pandemic. From your perspective, how has the pandemic affected caregiving?
L: It definitely made everything worse. People had their kids at home on their own. So, like one woman that was working for me in the mornings, she quit because her sons were at home on Zoom, and she had to be there in the mornings with them. And that was the same time that she was helping me. Also, people were worried about leaving their house. So, I lost some people there. Also, while I support unemployment insurance, with the government increased payments, less workers were willing to work. And now I'm encountering people that don't want to be vaccinated or wear a mask! So that is putting my health at risk.
J: What would you say to people who are like, well, why can't you just rely on your friends and family?
L: Oh, gosh, and that’s the question I get a lot. People don’t realize it’s just not that easy. Of course, I appreciate it when friends or family help in an emergency, but I can’t rely on that. It's a very slippery slope. You don't want to ruin relationships. Additionally, they don’t have the training they need, and a lot of the care is personal so it can get awkward. It’s not like you would invite your doctor over for dinner. There are boundaries you just don’t want to have to cross. And then there are some family members that just don’t or can’t help, so that just isn’t an option.
J: So what are some of your solutions for addressing the caregiving crisis? I know you've talked about some of them in some of your answers already, but, as I like to say, “if you could wave a magic wand?” Is it is it money? Is it workers? Is it training? What would be the solution?
L: I think it's a lot of things, so I definitely think there needs to be a tiered system. You have to give people an incentive to be compensated. I wish lawmakers would actually spend time in the communities that they are representing. Sometimes you don’t understand a situation unless you see if firsthand. And then with unions and other special interest groups, I think they need to solicit information from us, too. We need to work together, understand each other, and not just talk at each other. And people need to get involved. I mean, I know there's a lot of people with disabilities that are advocating. But sometimes I think it is a lot of the same people. And that's partly why things don't change. We need some new voices.
J: For those of our readers that might not be aware, there has been a push to unionize caregiving workers. Additionally, in California, there has been an implementation of an electronic verification system for reporting hours. What do you think about these changes?
L: I’m pro-union. I support working conditions that are favorable and that are respectful and that workers are going to be compensated what they what they deserve. But sometimes the problem with the with the unions is it becomes a little bit more politicized in a sense. It's also, again, a bunch of able-bodied people making choices for people with disabilities. But are they considering, how all of their policies are going to affect people with disabilities? I think there are often good intentions with certain policies and programs like the EVV System, but then there can be unintended consequences that can actually harm the disability community. That is why we need our own representation, like a disabled person’s union. People who are disabled who can sit at the table and represent our interests and negotiate on our behalf. We have to have a say and input on what impacts us because if we don’t, we're going to left out be left out of care completely. We become a training ground for trial and error and that's not right.
J: So for one of my last questions, I’m hoping you won’t mind getting a little vulnerable. I know there are many days you are limited in what you can do because of a lack of care. How does this struggle really make you feel? This isn’t about looking for sympathy, because I know you are a proud disabled woman. But on the other hand, I think it is important for everyone to know the emotions behind your strength and pride.
L: Well, it makes me feel invisible, forgotten and feel abandoned. It makes me feel isolated, and sometimes depressed. It makes me feel sad, angry, and frustrated. It sure doesn't make me feel happy. Also, it's very depressing not to be able to get up and get dressed when you want or to wear what you want or to be able to do your hair or make-up how you want. We should have a choice whether we want to sit around in whatever we want to wear. But that doesn't happen when you're stuck in a bed because your caregiver didn’t show up for work that day. It also is very dangerous not only for my mental health, but for my physical body as well, because there's certain things that happen when you're not able to move. We should have we should have the choice whether we want to do that or not. And we shouldn’t be forced to have to ask our family for help. Like with my sons. They understand my disability, but I am their mom. They shouldn’t have to worry about caring for me. And this brings me all back to the point that it doesn't have to be this way.
J: I’m thinking one thing that has helped you keep going even with all of the challenges you’ve faced, is hope. What is your hope for the future of caregiving, and maybe disability advocacy in general?
L: Well, my hopes are that there's more people that are willing to work in this capacity with more knowledge and advocacy. And that policymakers and people who are making the decisions for caregiving programs, both public and private, start to realize that they have to educate themselves as well. And they need to listen to the disability community, and become our true ally, and not try to manage from the outside. We also need to instill hope in our younger generation, because our students with disabilities that are growing up now are the future of our movement. I want them to understand the struggles but also know they have the power to help change for the better. It’s like with the peer support groups I help lead for newly injured people, I must find a balance between giving them the truth of all the challenges they might face, but also communicate that a disabled life has purpose and meaning. I think you just do it by being a living example.
J: Is there anything else you want to say about caregiving that I didn’t think to ask?
L: Yes, I want to say that caregiving is a partnership. Both people need each other. One needs to get paid, and one needs care. Like in any business relationship between an employee and employer, there is a teamwork approach. And we all know that when people work together, regardless of the circumstance, things go better. But I think with disability it gets skewed though, because back to what we've already talked about, people with disabilities aren't seen as real people. They aren't seen as part of the team. That's very one sided. I also hate it when people refer to caregiving as caretaking. I'm like, you shouldn't be taking care away from anything. It should be a relationship of caring for and about each other. But I think there's been such a push to be so individualized that people have lost sight of what it really is.
Editor’s Note: Answers have been edited for clarity and length.