America is a place where people have freedom to move where they want, to work, to be close to family, and build the life they want. At least that’s how it’s supposed to be. But people with disabilities can be denied that freedom and end up in the disability trap. This is me. I’m a documentary filmmaker. I may have a severe disability, but I strive to be independent. In the year 2006, I was diagnosed with multiple sclerosis. My most recent film was about my life since then. M.S. is a neurological disease where your white blood cells attack your nerve endings, separating your brain from your body. Consequently, there’s a gradual decay in your mobility. The film premiered at the Sundance Film Festival. Later, one of my dreams came true when the film won an Emmy. And the winner goes to “When I Walk.” [applause] This award is dedicated to all people with disabilities from around the world that are putting their stories on screen. [applause] Soon after the film premiered, another of my dreams came true, when my son Jay was born. What are you going to do today? Yeah. It was the best thing that ever happened to me. I watched Jay grow up all the way to his third birthday. And then he was gone. Things were not working out between his mother and me. As many as 50 percent of couples where one spouse has a disability end in separation. The other person is more prone to depression or caregiver burnout. [sobbing] She decided to leave. She found a job far away from my life in New York City in Texas. I need to find a way to be closer to my son. Even though it may be difficult, I need to try. [baby talk] Our life dreams are sometimes pulled away from us. Good morning. My symptoms have gone from bad to worse since they’ve been gone. [cat meowing] [distorted voice] I can’t use my upper body anymore. I can’t even open my hands. And my vision is extremely blurry. [doorbell ringing] Hey! Good morning, Jason. At least I still live independently. Yeah, see you tomorrow. I have a rotating crew of carers covered by New York Medicaid. They have become my friends and creative collaborators. Every day at 8 p.m., they have a change in shift. Bye. Goodbye. Why don’t you start, Jason, by introducing yourself. Living at home allows me to pursue my dreams — my filmmaking, my nonprofit, and being a voice for people with disabilities. So this is Sabina. Losing this independence would be the end of my filmmaking, the end of my activism, and the end of me. But losing my son has made the past year and a half impossible. [Skype ringing] Happy birthday. If I’m going to have a real relationship with my son, I have to move to Texas. My mother comes for a visit to support and help me gain some perspective. Do you want to live in Austin, Texas? I would live in Austin, Texas, if it was OK to live there. It’s a no-brainer. You’ve got to be where the health care is there. But it’s like — but I don’t even have a choice. There is no but. But I don’t have a choice. This is your choice. You have a choice to live independently here, or you return to being institutionalized. Or be by my son. Do what you love to do, filming documentaries, because life is short. And then we die anyway. I want to be around my son, but I need to find the same care I get here in New York. I start doing research on state rankings for their Medicaid programs. These rankings are based on how states treat their people with disabilities. Medicaid support is completely state-run. State by state, there’s no consistency for supporting people with disabilities. While New York is in the top 15 overall, it’s number one specifically for reaching people with disabilities in need, while Texas is dead last. I attempt to get the same health care I get in New York in Texas. [ringing] Yeah, that’s right. I started looking at the states surrounding Texas. If I can’t live in Texas, at least I can try and live in a bordering state. [ringing] [ringing] Oh. The opposite of living independent at home is living in a nursing home. This is going to hurt a bit. A nursing home would restrict my daily living. I would have no control of what time I wanted to leave or what time I went to bed. Anything beyond the basic necessities would be extinguished. No work, no independence, no freedom. The health care situation looks bleak, but there has to be a way. I go to Texas to find out more about living near my son. I want to cheer for him after his first soccer goal. I want to watch him get slide tackled and take him out for ice cream after so I can explain to them that sometimes life hurts. But you always have to remember, you have to pick yourself up. Here we go. I interview others with severe disabilities living in Texas. I have a traumatic brain injury caused by a motor vehicle accident. We’re proud to be Texans, but we’re not necessarily as proud of some of the shortfalls on programs for disabled people. We were in a car accident — how long ago? 2008. It looked like there was life in her eyes, but no life in her body. You cannot get 24/7 care. I don’t buy it. I’m not buying this whole national and state mindset. We represent people with disabilities, who are generally considered the lowest-income demographic group in our society. If someone does relocate to a different state, there should be at least no interruption of services, if there’s some sort of smooth continuity of services. So in my situation, to be closer to my son, who’s in Texas — I live in New York — is there any solution? Or am I just stuck? [sighing] It’s almost like you’d have to reconfigure your life entirely, Jason. Because I just can’t see that you could come here, be close to your son, and find yourself in a position that the only way you can get the care you need is to go into a nursing home. And you’d find yourself, again, isolated from the child you want to be close to. I don’t have words to describe how sad this is. I should be able to live near my son without giving up my reason for living. Is that so much to ask? Why should people with disabilities like mine be forced to make these impossible choices? But I’m willing to investigate anything. So with no option left, I check myself into a nursing home. The staff here are professionals. They do an O.K. job, but I have no freedom of movement. One. Two. Three. O.K. No way to do my work or continue my activism. Good morning! Basically, I’m just put into storage. Nope. What do you mean? Regular liquids. I just can’t do it. I want to say to you that I want to be here with you, but I would die a slow death. So … sorry, but I’m not going to be able to do this. [sobbing] See you later. I wish more than anything that I didn’t have to choose between the two things that make my life meaningful: my son and my life’s work. But the differences between the care I get in New York and Texas forces me to live where I can get the health care I need and continue my career. This hurts. Nobody ought to be forced to make these choices. No matter how far away we are, my son, I will never abandon you.