This article is about Joaquin Carson, a 53-year-old autistic man, and his family, and a life-challenging access need. I am his sister Diana Pastora Carson, writing with his permission to share this story.
11 years ago, our family won a 3-year court battle and was able to bring my brother home from 15 years of institutionalization. Joaquin continues to heal from the physical and emotional wounds inflicted on him during his many years of segregation and dehumanization.
Our family and team have worked hard to make his community living a great success. And the first thing we had to do was create an environment that would ensure such success. So my husband and I bought a home in Jamul, a rural area on the outskirts of San Diego County. The home is on 8 acres, and has a barn. My parents dipped into their retirement savings and converted the barn into an apartment for Joaquin. But it wasn’t just any apartment.
Because Joaquin has complex behavior support needs, his home needs to be durable. So his custom-home and its contents are indestructible and easily sanitizable.
This means that there are no pictures hanging from the walls. There are murals painted on the walls instead. Appliances and cabinets are bolted down securely. Furnishings are durable and easily cleanable. Windows are shatterproof. His shower is designed without doors or curtains, but a half-wall instead. His bed is bolted to the floor and he has a wall cushion for a headboard to protect his head if he bangs it, which he does when he isn’t feeling well. We thought about Joaquin’s specific needs and designed his home to meet them. We describe his home as “Joaquinified.” But really, the bulk of the design revolves around durability.
This durable environment has worked out well for Joaquin. During our 3-year court battle, we were told that my brother could not be included in the community because he was a “danger to himself and others.” But we knew that if we provided access to the right environments and the right supports, he could be safe and successful in the community, and have a much better life quality.
Eleven years later, we’ve proven that to be true.
But we’ve been lucky. Had we not had the financial resources, education, connections, energy, and tenacity, we could not possibly have pulled it off. Our success is a culmination of privileges that we know many others do not have, which led to a life for Joaquin and our family that many families cannot even imagine. And yet, having Joaquin as my next door neighbor, with 24-hour direct support staff, in a community where he is loved and appreciated, has been not only life-altering, but I believe, also life-saving.
However, during the wildfires of 2020, his security and life quality, and his life, were challenged in a big way. We had to evacuate, not once, but twice. And then again, we evacuated once in 2021. During the evacuations, we realized that we had nowhere safe to go.
It’s bad enough to have a natural disaster and to have to flee to safety. But when you realize that there is no safe place to go, it takes the terrifying experience to a whole other level.
We had no safe place to go. For us, “safe” meant “durable.” We wanted to go to a hotel for privacy, so Joaquin could at least use the bathroom, which, with gut issues and behavioral complexities, can be a difficult process for him, sometimes lasting hours and resulting in the need for repeated showers and cleanup.
But there was no hotel that was durable, hence “safe,” and easily sanitizable. If my brother were to be having a day of intense body dysregulation, even with maximum sedation available to him, hotel lamps and toilet tank lids would most likely be thrown. The shower curtain would be torn down. Unsecured furnishings would be damaged. Hotel carpeting could quickly become soiled with feces. We discovered that this perfect environment we had created for Joaquin at home was not accessible to him anywhere else outside of an institution.
Although friends reached out to make sure we were ok, and generously offered to let us stay at their homes, we knew that doing so would be unsafe as well. Other friends were making calls to hotels and agencies to try and find a safe place for us, to no avail. Even a local agency that serves adults with developmental disabilities, and that has durable environments (and happened to be shut down during the Covid pandemic while still getting paid by the government to serve our community) told us that we could not take refuge in their empty facility. That was a huge blow. We felt very alone, abandoned, and disregarded by society as a whole.
Fortunately for us, two out of the three times we evacuated, we were able to return home the same day. And the one time when we couldn’t return home, Joaquin was having a miraculously mellow day. He and two of his staff were able to spend the night in a local group home that happened to be vacant at the time. However, the home was not durable. The windows were glass, there were delicate furnishings, glass shelving, and wall-to-wall carpeting. On a bad day for Joaquin, the arrangement would have been a disaster of its own making. I could not sleep that night, worried about him and his staff; worried about the potential damages to the home; worried that law enforcement would be called, rendering him another statistic of a disabled person hurt or killed at the hands of those employed to protect and serve; and worried about what we would do the next night if he couldn’t return to his own home. To my great relief, firefighters were able to save our valley, and we returned to Joaquin’s safe, durable environment the next evening. Given that this 6-foot tall, 180-pound man’s body dysregulation can be extreme, we dodged a bullet.
Although Joaquin’s safety, and the safety of all people, is central to this article, the story would not be complete without acknowledging that lack of safe and durable environments in our community is a result of ableism. And as all “isms” affect people’s lives, ableism is no exception. Obviously, first and foremost, it affects my brother’s life. And as his sibling and closest life-long relationship, it affects me.
Ever since these traumatic evacuation experiences, my own health has been affected due to the added stress of keeping Joaquin safe. Shortly after the first evacuation, I was diagnosed with vestibular migraines, resulting in episodes of vertigo, and I retired due to disability after 25 years as a classroom teacher. Aside from my health, travel to visit my sister and in-laws on the east coast, and my extended family in Spain, as well as any travel for pleasure has come to a halt. I am not comfortable traveling for any extended period of time, and especially during fire season. The fear of being gone during a time when Joaquin and his direct support staff would most need me to advocate on his behalf has taken over my life. While I’m getting mental health support, working on self-care, meditation, and stress management, the reality is that I still feel trapped. If I pursue family weddings, holiday gatherings, vacations, and even work travel to supplement my income, I do so at the risk of not being here for Joaquin and his dedicated staff should he need to suddenly evacuate. And for obvious reasons, although I would love to take him along with me, it is not possible. Again, we’d have no durable place to stay.
To some, this may seem like unnecessary self-torture, co-dependence, and wasted energy. Perhaps. But those reading this who have loved-ones who depend on them for safety and care, and who are 100% committed to their safety and care, are more likely to understand.
So being the neurotic sister that I am, I’m not just sitting around waiting in fear for the next incendiary event. I am using my energy to educate, to network, and to find solutions.
So far, in the solutions category, I’ve got the following possibilities:
1. Pray for Rain (in Southern California)
2. Buy an RV (an expensive experiment)
3. Collaborate with local, state, and federal agencies (in progress, fingers crossed)
4. Create possibilities with the hotel industry (let’s talk!)
5. Expand our interpretation of the ADA
So let’s take a closer look at the options.
Pray for Rain: Rain in Southern California in the middle of summer…you do the math.
Buy an RV: As our family evacuated, our dear friends jumped into action, creating a GoFundMe page that raised $5,000. It was the kindest, most heart-warming gesture of support. Furthering the action so that we’d be “prepared” for the next fire, our father bought a $13,000 trailer with the idea that we could tow it away and have a private space for Joaquin to evacuate to. I traded in my paid-off Rav4 for a truck (still not paid off) so I could tow the trailer in the event of an emergency evacuation with nowhere to go. But for the next year, I was stressed about not actually knowing how to tow a trailer and hook it up to water and electricity. So my father sold the trailer and upgraded to a used RV that ended up costing $22,000 and is sitting in my father’s driveway, just in case we need to evacuate again.
So you might be thinking, “Great. Problem solved,” right? But upon further consideration, is an RV really a solution?
The reality is that the RV is an expensive experiment. So even for just one day, it’s a stretch to call an RV a “solution.” Although it’s the most concrete possibility we have for now, it has many notable downsides when it comes to keeping Joaquin and his team members safe:
• Not durable nor easily sanitizable: We anticipate that it would need extensive repairs and replacements during and after Joaquin’s stay in it. And we are concerned about the possibility of him injuring himself and/or others in the confined space due to lack of durable features.
• No place to take it: Even with an RV, we don’t have an assured place to go that would be safe for Joaquin. An RV park would likely be too crowded, and not likely to tolerate loud, sometimes aggressive, sometimes destructive, (and sometimes naked) behavioral episodes should they arise.
• Lack of appropriate community connections: We do not have any connections to campsites or know of any private spaces that would ensure Joaquin’s dignity in the event of a behavioral outburst in a new environment. He would not do well in a crowded campsite. So we’d have to hope that a private citizen would open up their land to us, and we’d have to drive to someone’s private property, which depending on location, could be restrictive in terms of staff being able to drive there as well, due to distance and transportation.
• Water access: Joaquin takes multiple showers per day due to bowel issues and routines that involve his hands and body not being in full control. Unless we are hooked up to a water source, we will run out of water quickly, leaving him and his staff in unsanitary conditions.
• Operator ignorance: We are not campers. We don’t know the first thing about how to hook up an RV and clean out the sewage, etc. (apparently, there’s a lot to learn!)
• Short-term possibility: Joaquin’s behavioral dysregulation cycles depend on his health. So although he may have a few mellow days, if he were evacuated for an extended period of time, an RV certainly would not provide long-term safety or a sense of security.
So, although I am relieved to have an RV as a “backup plan,” we’ve learned with Joaquin that the “best laid plans of mice and men often go awry.” His big, strong, dysregulated body often changes our plans.
Aside from the cost of an RV, and limitations related to Joaquin and his support team’s needs, having an RV be the solution for us is also problematic in that it is not a reasonable solution for others. There are many individuals, families, group homes, and supported living agencies out there that cannot afford to buy a used RV in the case of an emergency, or like us, know that an RV would not actually meet their access needs. So what is their back up plan?
While other families around the country are able to stay in disaster relief shelters, or book hotel rooms, and people like Joaquin and our family have no place to go for safety, it painfully feels like discrimination. I do understand that this discrimination is based in ignorance and is unintentional. However, it is still discrimination: unfair, unsafe, unchecked, and unresolved.
For us, an RV as a backup plan feels like trying to plug a leak in a row boat with your thumb. First of all, water still seeps in. And your thumb gets tired and sore and can’t last for very long. Eventually, you just sink anyway while others whiz by in their fancy motorboats. I have no intention of sinking.
Collaborate with Local, State, and Federal Agencies
In the hopes of not only staying afloat, but helping others do the same, I’ve been reaching out to heads of agencies and departments, spreading the word about the need for “durable accommodations.” I have bent the ear of many federal and state agencies including the US Administration for Community Living; US Department of Health and Human Services Administration on Disabilities; US Access Board; California Governor’s Office of Emergency Services; California Commission on Disability Access; California Department of Developmental Services; the State Council on Developmental Disabilities; and Disability Rights California.
While all of these agencies continue to be interested in and supportive of my endeavors and some have partnered with me in seeking real solutions, the initial feedback I received from a few individuals was, “I’ve never heard the term ‘durable accommodations.’ What is that exactly?” Had it not been for Joaquin, the concept would be completely foreign to me as well. So I say, “Welcome to our world.” My parents perfected the art of durable accommodations. I inherited their inclusive and life-saving wisdom, and aim to share it with the world.
I don’t fault anyone for not knowing that durable accommodations are an actual access need. Historically, people in need of durable environments have been, like Joaquin was for 15 years, institutionalized. So there was no need for durable environments in public spaces. However, now that our focus is home and community-based settings instead of institutions, we must acknowledge durable accommodations as an access need. And once acknowledged, we must take action.
Action is the only way to demonstrate that we actually care. Yes, individuals, families, nonprofit organizations, must broadcast this need. Speak this truth to the powers that be. And yes, social services agencies and organizations must collaborate, without delay, to come up with federal, state, and local plans for housing people with complex behavior support needs during emergency evacuations. But dare I propose a more confronting, yet more inclusive, and less discriminatory idea for action?
Create Possibilities with the Hotel Industry
What if the hotel industry, or even one chain of hotels or motels, seriously took on hospitality as an “access for all” issue, and made a decision to have at least one room at each of their establishments be durable? It could still be comfortable. It could still be designed with beauty and brand in mind. It could still be used by all guests. But most importantly, it would be accessible to individuals with complex behavior support needs. In the event of an emergency, it would be a safe place to go.
I fantasize that with leadership from within the hotel industry, in this era of diversity, equity, and inclusion, the implementation of durable accommodations will spread organically (like wildfire) because it is the right thing to do.
Who will light this fire? Who will do the right thing? Where are the caring corporate leaders and business owners willing to champion widespread inclusive solutions? Let’s not ignore this injustice. Let’s not wait for governmental intervention.
Expand Our Interpretation of the ADA Title III of the Americans with Disabilities Act addresses access to places of public accommodation and services:
Public accommodations must comply with basic nondiscrimination requirements that prohibit exclusion, segregation, and unequal treatment of people with disabilities. They also must comply with accessibility requirements for new and altered buildings and remove barriers in existing buildings, where it is easy to do so without much difficulty or expense. – Pacer.org
The intent of the Americans with Disabilities Act is to ensure access for all people. Many of us think of the ADA solely in terms of wheelchair access. Yet even with our current interpretation of Title III of the ADA, and implementation of accessibility standards, many wheelchair users still experience challenges finding accessible hotel rooms. Given these challenges, some might assert that we can’t even ensure wheelchair accessible accommodations, so we should first work on fixing that problem. I say that both scenarios, one in which a person with a mobility disability cannot access a hotel room, and the scenario in which an autistic person cannot access a hotel room, are examples of “exclusion, segregation, and unequal treatment of people with disabilities.” Both are injustices. We must be a united front to ensure that everyone’s needs are considered and everyone has access to safe, accessible accommodations.
More great information from author Diana Pastora Carson