Equality in "Disability" - Day 82

Art made by an individual diagnosed with a developmental disability

Today I had an interesting experience at work where my "client" ("C") threw up after lunch, but claims it was involuntary, although he reported to not feeling sick. C is the same person with whom I brainstormed "Conscious Eating" and this person regularly practically "inhales" food, taking bites before swallowing previous bites, eating a few bites of each item in his lunch one after the other, not chewing very much, etc. C also regularly dry heaves food back into his mouth and then chews on it, and also regularly reaches his fingers to pick food out of his teeth to then chew on. C reports that this is all involuntary behavior, that he is aware that it is happening, does not like it, and does not know if he is able to stop it. However, C also regularly avoids difficult conversation topics such as this, or conversations about stealing, which he also does, and within avoiding these conversations C will kind of just brush off the questions as if he "knows" already and does not want to face himself in self responsibility/honesty. I have reminded C that he already knows what to do, he is responsible, and he can implement what he knows.

In my conversations with my coworkers so far it seems as if they believe that "brushing off" a topic is all that C is capable of doing. Like they just accept that he does not want to talk about himself in these points and allow that to then be the course that is taken without any kind of support to assist him in talking about these topics or in addressing whatever resistances he is having to these conversations. But C is really very remarkable and I am greatly enjoying working with him. He is very smart and inquisitive, enjoys sharing interests with others, is considerate of others, and expresses as well as shows great interest in self improvement, self understanding, and self responsibility. C is extremely interested in reading and carries around multiple books every day, one about 1,001 ways to do good, one about planning and organization, and now a new one about mindless eating, as well as some others that come into the mix some days. C becomes engrossed in these books, loves to learn, and loves for others to also learn/benefit from the information in the books. He does have a significant speech impediment and tourette syndrome, but he is perfectly capable of meaningful communication if his communication partner can simply have the patience to engage in such conversation with him. He can also write efficiently and has even shared with myself and my supervisor some of his self reflective writing in his journal -- writing which demonstrated that he really wants to change himself and take responsibility for himself. So there's really no reason to just accept and be complacent with C's reaction as resistance to these difficult topics of conversation when one is in a position of providing support.

After today's incident is when C acquired the book on Mindless Eating. During the initial portion of my conversation with him, C stated "I just can't get it out of my mind" after having first found the book about two weeks ago at the drug store. C's mother agreed to meet us and buy the book. On the car ride there, I was asking C some questions about the regurgitation behavior, when it started, what feelings/emotions come before/during/after, etc. C was "not sure" about most of the answers. C stated that this book seemed like it would have the answer. I pointed out to C that this book may or may not have answers, and that even if it does have pertinent answers, it is still just a tool, and it is up to C to use that tool to support himself. C seemed receptive to this, but I can't know for sure.

I found that I was frustrated with the whole situation, because first of all, when I contacted my supervisor for "support" in this situation, as I was not entirely sure what to do, as I was never properly trained, he basically said to give C an easy day and not address it. I had reported that C was avoiding conversation, and apparently this was enough to mean that the best way to support C was to just ignore the incident and pretend right along with C like it hadn't happened. So it's like any excuse that someone might give for not wanting to participate in meaningful self reflection would be accepted and life would just go on without acknowledging that there is probably a lot more going on than the individual is letting on, because of shame or embarrassment or other reasons possibly. So here we have a person in a supervisory support role who is not effectively supervising or providing support.

I was also somewhat frustrated because the particular book that C found is obviously not the most pertinent book, as can be concluded quite easily from the table of contents and the reviews on the back. It's about mindless eating but I sense that there are probably a great many other books on the market that would be more useful and relevant for C that could be found for a similar price online. But nonetheless C's mom was just kind of like, "oh okay, if you think it will help." And I could really see myself in C in this instance, because my mom always "supported" me by buying me things I wanted. So if I was having a "bad day," it meant I got to go shopping. And I could see how C was getting excited over the prospect of getting this new item that had been in his mind as some kind of ideal answer that he had identified himself as wanting, just like I have always placed things that I want up on some pedestal where I believe once I get that thing everything will be okay. Don't we all? So suddenly C didn't have to face himself and have a conversation and actually figure some things out -- instead he got a new book. But at least I can trust that he will voraciously consume this book and reflect on it and it may in fact assist him in understanding himself. I just hope he can translate the words into his lived application -- so far this is not something I have observed, but as we know this is a process. :) Also I have not known C for very long and his interest in mindless/conscious eating is only a month or two old as far as I am aware.

So it's really frustrating that here we are all in this field/industry/business of SUPPORT and yet so few people are actually supporting the people we are supposed to support -- asking pertinent questions (many of the answers I got today are probably things that my supervisor is not even aware of -- I imagine the report I just wrote will be the first that he learns some of these things, and yet all it took was asking some simple questions from the starting point of accepting this person as equal and as capable of self reflection and self support), providing relevant tools, and also engaging these individuals in learning how they can be their first and primary source of support for themselves (and a book like this book could be a great source of self support for C, so that is really cool, but I am just guessing that the most pertinent book is not going to be found at Rite Aid -- but! what do I know?).

The woman I used to work with, for example, would CLEARLY benefit from seeing a therapist to talk out her anxieties and paranoia, and yet whenever she complains of physical symptoms which do not improve with medical intervention (and always get worse when she expresses anxiety or when change is happening), she is simply sent to a psychiatrist to get more or different pills to take. So here it's like the assumption is that she is not capable of self reflection or of changing her thought/belief systems or taking responsibility for her reactions, and instead she is just, like... something that needs to be fed pills in order to adjust observable behaviors.

This other person, C, is obviously also extremely intelligent and interested in learning self responsibility, if only provided with the actual tools and support to learn it, and the actual real effort put in by the individuals who are in the paid position to care for and support this person -- effort which is often not there, as I have even written about within myself in my own work ethic.

Even at my old job in Denver, I had students who you might think (assume! judge!) would not be "able" to participate in talk therapy due to their cognitive abilities and/or speech abilities, but nonetheless they had therapists in their lives who were there as points of support either for conversation / sorting out all of their confusing thoughts/feelings/emotions/reactions or as simply a consistent stable person to, for example, play basketball with and have as a kind of mentor, who also has the psychological background to provide cognitive/behavioral support or other kinds of therapies.

There's all this talk of "equality" in this field and in this organization in particular, and yet there is a real lack of support as equals as LIFE when it comes to supporting these individuals with developmental disabilities in terms of allowing them the agency and finding the tools to advocate for and support themselves. I continue to see more and more why this is not an organization that I want to continue to work for, so I am happy to be leaving. But I am also beginning to see that I will probably run into these same themes in most agencies, and that if I wish to continue in this field I will have to learn to stand in stability within myself as what is best for all, regardless of the systemic integrity of the organizations which employ me.


Of course I cannot really judge anyone other than myself here, and I realize that although I have a BA in psychology and about a year and a half experience working with individuals diagnosed with developmental disabilities, I am not an expert, nowhere near one. But it really does not take more than common sense within self honesty to see some of these things.

I forgive myself that I have at times accepted and allowed myself to "give up" on doing my job effectively and thoroughly, actually showing up and being present for my job and for assisting and supporting the person I have agreed to and am expected to assist and support.

I forgive myself that I have accepted and allowed myself at times to think something along the lines of "here we go again," and "letting it slide this one time won't matter" where here I give up on actually intervening appropriately and providing appropriate and relevant assistance and support because I am "too tired to deal with it right now" or I am otherwise wrapped up in my own self interests within and as my mind.

I forgive myself that I have accepted and allowed myself to take advantage of the position that society has placed individuals with disabilities in and that within this I have allowed myself to take advantage of these individuals as my unwillingness to unconditionally and unwaveringly support them where they are, to meet their needs as they come up, and to seek to understand them as individuals and to equalize myself with them as life and to advocate for and support their rights to life in oneness and equality, simply because the consequences are seemingly minimal to myself although the consequences are extensive for the individual who is forced to go through life being "supported" by a system of abuse and neglect.

I forgive myself that I have accepted and allowed myself to take the easy way out when a "crisis" arises or an "intervention" is necessary because this is in fact a difficult and demanding job and I have not supported myself appropriately to meet these demands, to be present in self honesty and self responsibility.

I forgive myself that I have not accepted or allowed myself to appropriately support myself in my work to be able to meet the demands of my work within each moment in self honesty and self responsibility as what is best for all.

I forgive myself that I have accepted and allowed myself to make excuses for not performing my job to the best of my abilities not only within self responsibility or my responsibility to my employer, but within and as a responsibility to life in service and support of individuals who have lived lives of abuse and neglect and misunderstanding already.



So I commit myself to continue my process of equalization and investigating how to actually, practically, realistically, and sustainably meet the needs of and support individuals with "disabilities."