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I’ve been studying thanatology (the study of death, dying, grief, and loss), and I’ve noticed that many of its essential ideas should also be applied to people with disabilities. Recently, I’ve been reading about maintaining dignity during end of life using the Dignity Conserving Model developed by Harvey Chochinov. There is a very real potential to lose dignity as you age or become sick—your independence decreases, your functional abilities change, your privacy can be affected, and you may begin to feel like a burden.

For people who are aging or sick, these losses are typically acquired; neurotypical people are usually not born in these states. However, people with disabilities are often born into circumstances that can affect their dignity from the very start. They are born needing additional support and with different adaptive skills. Having a disability frequently impacts one’s right to privacy—not only in terms of physical care, but also regarding personal information, diagnoses, bodily functions, and intimacy. And the truth is, society often treats people with disabilities as if they’re a burden. Mencap, a UK organization that researches how people with disabilities are treated and advocates for their rights, has highlighted this problem. One of their reports noted that while there are some positive practices out there, overall there’s still a “lack of respect for the dignity of adults with learning disabilities” (Matthews, 2011, p. 188).

There is where the Dignity Concerning Model of Care comes in. I think that it can be extremely helpful when we are looking at the care that people with disabilities receive. Ideally, I would hope that we view all life as deserving dignity—regardless of someone’s capabilities, income, productivity, or level of “compliance.” But even beyond that moral belief, there is a reciprocal truth at the heart of dignity: when we treat others with dignity, we are also safeguarding our own. Chochinov captures this beautifully when he writes, “Delivering care that bestows dignity on others confers and safeguards the dignity of the provider.” In other words, the dignity we extend outward is the same dignity that shapes who we are and how we experience ourselves. If we want dignity for ourselves, we must offer it to others. There is something deeply beautiful about that circularity—how dignity moves between people, strengthening both the giver and the receiver.

And when we try to increase someone’s sense of dignity, it’s not just about what we do. We can’t simply say, “I talked to you twice a day. I gave you choices at dinner. You have free access to your cell phone,” and assume the person feels dignified. Dignity rests in how the person perceives our actions. Even if we intend to treat someone with dignity, that dignity may not come across. One reason for this is “care tenor”—the attitude and tone of the person providing care. Chochinov explains that “maintaining dignity goes beyond what one does with or to a patient [client, person, family member] and often resides in how one sees the patient” (Chochinov, 2002, p. 2259).

Some questions to consider:

• How do I define dignity for myself?
• How do my clients define dignity?
  • Have I asked them?
  • If they are nonspeaking are there body movements, facial expressions, nervous system changes that show me how they are feeling around me?
  • Even if your client can’t define, it is still worth reflecting on.
• Do I have any prejudices that come across when I am caring for them?
  • This question is not meant to shame anyone; this is an area of growth and introspection for everyone.
  • Before immediately saying “no”, really think about this question. Even people with good intentions, even people who are passionate about caring for people can have internal prejudices.
  • How often am I reflecting on this?
    • This is a one and done question. Are you checking in with yourself consistently.

I want to share an experience I had with a client. All information is general, and no identifying details are included.

I recently worked with an individual who wanted more control over her money, but her family was currently managing it. The client is her own guardian, so technically she should have been allowed to access her money. She decided to call a meeting with her team to talk about how she wanted that access.

During the meeting, one family member tossed a wad of cash at her and told her to count it. My client was unable to do so. But this wasn’t about ability alone—it was about context. She was nervous and stressed, which made focusing and processing difficult. She has deficits in scanning, which meant she couldn’t always identify the numbers on the bills. She has challenges with working memory, so it was hard for her to hold a sequence of numbers in her head and add them together. And with limited motor control, separating one bill from another was extremely difficult. When she said she couldn’t count the money, her father responded: “Well then I guess you can’t be in charge of your own money.”

The very next day, my client was “given” $20 by a family member. She bought a shirt she wanted. Instead of celebrating her independence, the family member got upset, saying she was spending her money on things she didn’t need. They then demanded the rest of the cash back.

Here’s the thing: I know plenty of neurotypical people who can’t count wads of cash. I know neurotypical people who don’t pay their rent on time. I know neurotypical people who make impulse purchases. Yet none of them lose access to their money. So why is it that people with disabilities are so often stripped of financial independence—simply because they have a disability?

Dignity of Risk. This is from a previous blog post:

If you have ever made a mistake, raise your hand. (Hint: every hand should be raised.) If you have learned from a mistake, raise your hand. (Again—all hands up.) If your mistakes have helped shape who you are, raise your hand. (Yes—all hands should be raised.)

Unfortunately, neurodiverse individuals are rarely given that same right. In my work in group homes, I often see staff, caregivers, and guardians put restrictions in place to prevent individuals from making mistakes. We do this with good intentions—we don’t want to see them hurt, sick, or sad. But when we take away their right to make mistakes, we also take away their right to be human.

As attorney Chris Lyons, who advocates for individuals with disabilities, explains: “The right to make a mistake is important because it is at the core of our human dignity. What makes us most human is our ability to enjoy our successes by also owning our failures. It is that contrast—that yin and yang of human nature—that allows us to truly be a person.”

Self-advocate Max Barrows builds on this when speaking to service providers: “Please don’t protect us too much—or at all—from living our lives. We are going to have to encounter failures through the decisions we make. That’s the number one way of learning where the lines are drawn, and it also helps us learn about ourselves. The dignity of risk is one of the many opportunities that people with disabilities deserve to have.”

Some questions to consider when you are using restrictions:

• Check your reasons
• Am I restricting access because I feel the need to be in control?
• Am I restricting access because it makes things easier for me?
• Am I restricting access because the individual has different values than me?
• Am I restricting access because I am dysregulated in this moment?
• Would I want someone to restrict my access to things in this moment?
• Am I respecting this person’s dignity?

References:

Dignity of Risk Toolkit from North Dakota Health and Human Services, April 2024 http://chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.hhs.nd.gov/sites/www/files/documents/Developmental%20Disabilities/Dignity%20Of%20Risk%20Introduction%20April%202024.pdf

Green Mountain Self Advocates: Dignity of Risk https://gmsavt.org/resources/video-dignity-of-risk

The MN Government Council on Developmental Disabilities, Self Determination: Dignity of Risk https://www.youtube.com/watch?v=RJ1aYsFTDS4

One major shift that I believe needs to happen in the field of ABA is when and how we reward behaviors. Too often, individuals—especially adults with disabilities—are asked to prove that they “deserve” autonomy, independence, or choice. In practice, this means many ABA professionals and staff require people to earn basic human rights before granting them. But why should freedom, dignity, and autonomy need to be earned at all? Aren’t these fundamental human rights?

Yes, there are exceptions—someone in jail, for example, might lose autonomy because of a crime. But when it comes to people with disabilities, we often use these same restrictive strategies simply because of their disability.

In my experience, clients are told they can only access autonomy, assistance, or freedom after they’ve demonstrated certain behaviors. For example:

• A client receives job support only after proving they can consistently complete chores at home.
• A client gets to choose which staff member to go on outings with only after showing “respect” to all staff members.
• A client may say no to an outing only after attending a set number of planned outings without behaviors.
• A client can keep their phone only after proving they won’t “bother” others by calling too often.

In each of these cases, the individual is being punished for very normal, very human responses to challenging situations. The burden falls entirely on them to change, rather than on staff and systems to change the way they respond.

Here’s what it could look like instead:

• A client receives job assistance simply because they need a job. Having a job may help them manage their home responsibilities, but those two things are not linked. Plenty of neurotypical people have jobs and messy houses.
• A client chooses which staff member to spend time with—no strings attached. Giving them that choice increases their sense of control and may naturally improve respectful interactions. If they’re disrespectful to certain staff, perhaps we need to examine how those staff are treating them. Respect goes both ways.
• A client chooses whether or not to attend an outing because choice is their right. Forcing anyone to attend five events before they’re allowed to say no is unreasonable. I know I’d “have a behavior” if I were forced to attend loud concerts I didn’t want to go to.
• A client keeps their phone, while parents are taught to set boundaries or reframe their child’s behavior as a desire for connection. Sure, frequent calls can feel overwhelming, but isn’t it meaningful that the child wants a relationship with their parent?

At the heart of this is a simple truth: people with disabilities deserve dignity, freedom, choice, and autonomy just because they are people. These should never be conditional. And I believe that if we consistently granted these rights, we would actually see fewer challenging behaviors overall.

My dream is to find a provider or group home willing to break away from outdated strategies—one that will show how behaviors, mental health, and overall happiness improve when people are given true autonomy and respect. When I share this vision with providers, I often hear, “Well, no one is abusing them…” But is that really the standard we want to set? Should people with disabilities be grateful just because they aren’t being abused? That bar is far too low.

If you are a provider or work in adult services and want to explore this perspective further, I’d love to connect. Together, we can prove that there’s a better way forward—one grounded in dignity, freedom, and respect.

This is a different blog for sure and one where I am going to be a bit vulnerable. I started as a BCBA in 2015, so I have been a BCBA for 10 years. I started as a Special Education teacher and then worked briefly in a clinic. I realized that my values really didn’t align with the work that I saw being done in ABA clinics, so I left and started working with adults and teenagers in group homes. This is not to say that all ABA clinics are bad, but the ones I saw were not great.

Throughout the years I have been questioning my choice to be a BCBA. It has definitely been an interesting journey. When I started as a BCBA, I was all in… I used terms like “attention-seeking”, I felt ok using extinction procedures and I was ok removing access to “preferred items”. The more I have researched areas outside of ABA- especially neuroscience, trauma and polyvagal theory- I have realized that the strategies I was so quick to use as a BCBA were harmful and may have caused trauma. Here are some of the concerns I have with ABA

• ABA simplifies the human experience into very basic functions. Granted, many BCBAs have been trying to make room for more complexity in this area. For instance, there are BCBAs that are acknowledging that trauma can cause an increase in behaviors and a history of trauma will impact a present behavior. There is also more talk about “experiential avoidance” or engaging in behaviors as a way to escape difficult feelings. But the majority of people who work with individuals who have disabilities are still using this outdated concept. 
• ABA focuses on manipulation. Some BCBAs might cringe at the word and say that my word choice isn’t great. But I believe it fits. Some BCBAs will say that they are trying to do more with positive reinforcement and reward systems and are trying to steer away from punishment procedures (i.e. time out, taking away something the child wants), but rewards are still manipulative. We are essentially only providing rewards for behaviors that we (the adult) find valuable. Rewards are often used in order to get a child to “comply” and act in a way that we want them to, regardless of their current regulation state or feeling of safety in that moment.
• ABA doesn’t make room for regulation. People can have “behaviors” because they are feeling dysregulated. Someone may yell and scream because they are having very difficult feelings and do not feel safe in that moment. The best thing to do here is help the person feel safe and do what they need to regulate their nervous system. A reward system does not change a nervous system and punishments do not regulate a nervous (in fact, they can actually cause an increase in dysregulation.
• ABA often puts all of the responsibility on the child. We often expect more of a neurodivergent child then we do of the adults in the room. How can we expect a child to be regulated if we are not regulated. This is a process called “co-regulation” and it involves the adult staying regulated in order to help the child feel safe so they can also be regulated.

I don’t know what my path will be, but I know what my values are. I value my client’s. But, more importantly, I value autonomy and I feel the need to advocate for my clients so they get more of it in their lives. I value connection with people and I feel that some ABA practices take away from that value. I value safety… and not just physical safety (although that is needed), but safety that felt and experienced internally. So, I think my question is “Is practicing ABA helping me live in alignment with my values”? Let’s start this journey of exploration!

References:

• Becoming a Trauma Informed Restorative Educator
• The Alliance Against Seclusion and Restraint
• Beyond Behaviors by Mona Delahooke
• Punished by Rewards by Alfie Kohn
• Self Reg by Stuart Shanker
• https://self-reg.ca/
• The Problem with Behaviorism

Have you heard the term “secondary losses”? As I was researching grief in individuals with disabilities, this term came up a lot. A “primary loss”, is the actual loss that occurred (e.g. your brother dying, your favorite roommate moving out) and it can be painful. “Secondary losses” are the losses that come because of the primary loss. This could mean lack of social support, decreased access to activities or extended family, financial insecurity, having to move, etc. People with disabilities are more likely to experience secondary losses and they are more likely to be severely impacted by them.

Look at the example on this slide:

            For people who experience a primary loss, but don’t have a disability, they may not be as impacted by secondary losses. They are more likely to have multiple systems of support, they are more financially stable and can afford help, they are less reliant on people.

            When it comes to supporting someone with a disability who is going through grief (especially a death loss), one of the best things caregivers and staff can do is find a way to minimize those secondary losses. Here is what you can do:

1. Identify how the person supported them.

2. Find alternate people who can provide similar support

If the individual you are supporting has cognitive/communication differences, it can be helpful to make things visual. I like to try to be as specific as I can in showing the person who they will continually be supported. Here is an example:

In this visual I am showing the client specific people who will help her and what activities they will help/do with her.

I recently came back from a trip to Thailand where I was providing information to staff at an orphanage/school on how to be trauma informed. I have done international volunteer work in the past and have learned what to do and what not to do. Volunteer trips where you are focused on just hanging out in an orphanage or teaching English for three months in an orphanage can actually be harmful for them. People (and I used to) often go into these experiences thinking that just because they are showing love or having fun, the child is benefiting. What we are actually doing is showing love, but then taking it away again. Ultimately, we are abandoning children who have already experienced being abandoned.

Unfortunately, I have done many volunteering trips the wrong way. I know more now, so I am trying to do better. When I went to Thailand, the focus was not on simply playing games and having fun with the individuals in the orphanage, it was about training staff. The best way to help the children in the orphanage was to train the people that will be their constant caregivers. The Foundation for Children is an organization that cares for children (from birth to age 18) who have been abandoned or whose parents can’t take care of them. Because these children have been through trauma (even if they hadn’t been severely neglected or abused, a simple disruption in caregiving can be traumatic), we thought it was important for staff to be trauma informed. However, before we started, I thought it was important to figure out the staff’s motivation for working at the orphanage. What brought them there? What was important to them? What was hard about what they did? How did they cope? I did this using an ACT Matrix.

The ACT Matrix is a concept that was developed by Kevin Polk, Mark Webster and Jarold Hambright. We start by drawing a horizontal line and labeling the left side “away” and right side “towards”. We talk about how people are always moving either towards things or away from things. What you move away from and what you move towards is very individual, it will be different for each person. But the underly premise is “Are you living a life where you are focusing on moving away from unpleasant things, or are you living a life where you are moving toward what is important to you”.

It was amazing to see how people responded to this exercise. Some said that this exercise helped them clarify what was important to them. It is easy to get caught up in doing rote activities and being able to get in touch with your values can be very freeing and therapeutic. It was also good to see what things staff were moving away from, because this helped me see what ways I could support them. I wanted to make sure I wasn’t assuming what their needs were. The ACT Matrix helped me see what was important to staff and what staff valued. It also helped me see what was difficult for staff and what was making their job hard. Both of these things gave valuable insight into how to start teaching the staff about being trauma informed.

Stay tuned for Part 2 where I find out how Thai people are doing it right!