Until I worked in the support services field I had no idea how valuable natural supports are. After knowing and supporting people with PTSD, FASD, addictions, and trauma, I feel like I have to re-evaluate every environment I ever lived in. I support people who live in realities which leave them isolated, often under surveillance and scrutiny, and leave them in the forever vulnerable state of navigating a world which often lacks the necessary modifications and support they need. It is easy for me to forget that myself and pretty much everyone I've ever known can take so much for granted such as community support using language we understand and can use ourselves, and having loving families (however imperfect they may be). This isn't a point of shame at all- we take this for granted because we have been fortunate to grow up in environments which have evolved to serve us. I am not going to stop taking this for granted, but I can start recognizing how much of a difference all of this made in my foundation of learning, emotional development, and to what extent it continues to shape my health and wellness.
The true value of having close friends and family that love you, enjoy you, and can freely see you throughout your life, provides more emotional and mental stability than I really understood before I started working with people who don't always have this. Many of the individuals I support do not have a place that they can openly talk or vent about one of the biggest and most constant aspects of their lives; their staff and funded support team. Thus, often times I see small frustrations about staff habits, changes made in their lives by upper management that they aren't happy with, and every day inconveniences such as staffing changes and restrictions, end up building up over time and manifesting in fits of rage, depression, and attention seeking/manipulative behaviors. It is known that staff should be treated with respect and not blamed when they make mistakes or move elsewhere for employment, but for individual's whose entire lives depend on the logistics and social habits of bonding with staff and depending on them to complete every day tasks, it is understandably very challenging living in a system of paid supports with all the insecurities which follow.
I remember wondering why it took individuals so long to trust me and why they resisted some things that just didn't seem like a big deal at the time. Now I know it is because when every aspect of your life is controlled and the majority (or entirety, in some cases) of your relationships are dependent on scheduling, meeting goals, and professional boundaries, your life lacks that essential freedom and intimacy that allows you to feel relaxed and secure. I can't imagine living a life with 24/7 paid supports because even in the best case scenario where you bond really well with your staff and live a pleasant and fulfilling life, still all of this hinges on the success of the corporate structure that your staff are employed under. Simple things like wanting to purchase pizza for dinner or some new video games while they are on sale become a logistical nightmare when trustees need to be contacted during working hours (and sometimes these people take sick days or are busy), cheques written and cashed at a bank, staff availability and access to a vehicle need to be considered, and how this works with or works against your goals considered as well. Natural friendships end up being hindered by all of this bureaucratic mess, especially if an individual must have staff present with them at all times. If an individual has a staff that their friends or family aren't fond of, this too effects their ability to be open and comfortable with natural supports. I can only imagine that individuals crave the opportunity to talk frankly about their paid supports and staff, and yet if they don't have friends and family they can see privately on a regular basis, they ultimately get stuck in a place where they just have to keep it to themselves.
I became a natural support for an individual after I left Quest. It was astounding and unexpected how big the difference was between being her staff and being her friend. When you work with someone for a while, you get a rapport that can feel like a natural relationship at times. However, the freedom we have now to be able to catch up and not worry about language, boundaries, and the distancing necessary for a professional relationship with unavoidable power imbalances is incredibly encouraging. Now, not only does she have a safe space to discuss taboo subjects as well as her paid supports and get honest conversation from it, I can engage with her naturally and not worry about constantly hitting checkmarks and imposing a rhetoric of wellness. She can complain to me about her current staff, I can complain to her about my current work, and neither one of us is in jeopardy of losing our jobs or a valued relationship. She can trust me with details knowing that I wont have to report them to others and there is no pressure to "please" staff or the agency by getting things done. Of course I am still concerned with issues in her life just as I was as her staff, but now there is no pressure for herself or myself to be a miracle worker in "fixing" these issues. Maybe this individual didn't want to clean her house at 7pm on a Friday, but that's when she had staff. Now, she can get help from a friend on a Sunday afternoon or whenever works. She can show me things she is excited about like her pregnant cat or a new bong, and I don't have to respond to those things with "that's awesome, but is this a healthy choice?".
Individuals often do not have the freedom to make unhealthy choices without judgement. I might neglect to do my laundry and my husband will not immediately remind me of this and track these habits on paper. Individuals in supported homes have to live with the awkward disappointment of their staff when they neglect to do even little chores like laundry, because at the end of the day staff have an agenda to meet and a large part of that is help ensure that chores are done. This is not really the fault of the staff or the agency- things need to be done and with many individuals, if it isn't structured they wont understand moderation/completing these tasks "reasonably well".
Boundaries are easily the most difficult aspect of my job, set aside behavioral challenges. When individuals have explained their loneliness, struggle with intimacy in finding a romantic partner, and at times even stories of sexual abuse, it is natural that I want to connect with them on a level deeper than a compassionate script. When I say "I don't know what to say, I'm just so glad you've shared with me. Everyone deserves love and everyone has value, no matter your struggles and differences" instead of "I know what it's like to feel like you weren't designed for love. The moment you've begun to believe this to be true and start thinking about statistics, you've set foot on a slippery slope. You are loved and valuable, but I understand why you are feeling this way." I am excersizing a professional boundary and a degree of intimacy and genuine connection is lost because of it. This is a necessary boundary of course and I'd never deny that- the reality of this being a job is apparent because I wouldn't always do it for free, and as such there needs to be a level of disconnect so I don't take all of my work home with me. These boundaries are emphasized to protect individuals and staff from emotional turmoil should things inevitably change, and these boundaries are there to protect everyone legally.
There is no real option for counseling and addictions/abuse support for individuals without the vocabulary and understanding that professional and group therapies typically depend on. I know from years of trying to find this for individuals in Alberta that there is exactly one therapist with any formal education on FASD, and he retired a few years ago. Often times counseling can be disheartening for individuals because either staff can't come with them to help them navigate the conversation or to cue the therapist to use more concrete language, or counselors are simply ill-equipt for the modifications needed to support these individuals. This is, again, of no fault to the therapists themselves, but more so of the system. There is gaping hole in the community for disability-aware mental health, abuse,and addictions supports. Though I can be there as an emotional support for individuals, unfortunately I end up using glib phrases like "it's not your fault this happened to you" and just trying my best to navigate the conversation kindly. I am not experienced or educated enough to help someone in processing legitimate trauma. The closest I can get is when someone inquires about my tattoo and I can use that as a jumping point. I may have a grasp on the language to use, but not the technique, and this is where community supports need to come in.
Individuals who are angry, mean, self-deprecating, and appear to act out in malicious and petty ways are often acting out because of years of unprocessed trauma and trust issues. Of course, having a disability does not mean you do not also have personality flaws. Some people are just more naturally petty or mean spirited than others, but nonetheless un-treated PTSD and trauma motivates a lot of behaviors in my field. Behaviors are always the result of an un-met need, be it emotional, physical, or mental. Boredom, not having enough control over their lives, emotional turmoil, medication side effects, loneliness, depression, and confusion are all very universal human experiences not limited just to those with a disability. We all exhibit behaviors to varying degrees, but most of us are not monitored and our behaviors are forgivable or kept in check by various natural supports like friends and family.
Over the years I have come to grips with the fact that the system I work in contributes to the trauma the people I support live with daily. Staff are not natural supports and while at the best of times they can be incredible and valuable companions, nothing compares to the stability and dependability of the love and honesty of a friend or family member. I was raised by a family who loved me unprofessionally, friends who enjoyed me and had no shift duties, and a world of community supports which spoke in my language and had (mostly) reasonable expectations of me. I live with a great deal of freedom and self esteem, and I am very very grateful for it. People with disabilities can and often do live fulfilling, happy, and meaningful lives with friends and family, but they will always have to accept the reality of the frustrations and trauma that having paid supports subjects them to. For every instance where their staff helps them and provides them with genuine compassionate care and support and even joy in activities they do together, there is another instance where that staff leaves unceremoniously or they get a staff who cannot bond with them in this same way.
Dr. Gabor Mate, a Canadian Neuroscientist and Addictions Counselor famously says "When you see a person with an addiction, ask not why the addiction, but why the pain". I believe this quote applies to behaviors too. When I find myself frustrated at the seemingly unusual behavior of an individual and when I would wonder why I wasn't being trusted, it helps to ask what experience taught them this. It helps to remember this in context, and while I recognize that the system I work in does harm as well as good, I also recognize that it's the best that we can do for now. All we can do in support work is reach out with kindness and try and support both wellness and joy in their lives. I hope that in the future I can advocate for the people I support to make more natural connections and have the space they need to be honest, uninhibited, and receive the freedom they deserve to voice their experience being supported in this industry. I believe that their voices would be an incredible resource for constructive criticism and they have to be heard because right now, frankly, they don't have the platform to advocate for their own rights. I hope to see this change, some day. Even if I am somehow involved in giving someone this platform and I hear back that all they did on that coffee date was complain about me and my colleagues, shit they have that right every bit as much as I do. If I can come home and complain about having to watch Pokemon, they should be able to complain about having to listen to the Fallout soundtrack in my car, plain and simple.
Ask not why the behavior, but why the trauma.
The true value of having close friends and family that love you, enjoy you, and can freely see you throughout your life, provides more emotional and mental stability than I really understood before I started working with people who don't always have this. Many of the individuals I support do not have a place that they can openly talk or vent about one of the biggest and most constant aspects of their lives; their staff and funded support team. Thus, often times I see small frustrations about staff habits, changes made in their lives by upper management that they aren't happy with, and every day inconveniences such as staffing changes and restrictions, end up building up over time and manifesting in fits of rage, depression, and attention seeking/manipulative behaviors. It is known that staff should be treated with respect and not blamed when they make mistakes or move elsewhere for employment, but for individual's whose entire lives depend on the logistics and social habits of bonding with staff and depending on them to complete every day tasks, it is understandably very challenging living in a system of paid supports with all the insecurities which follow.
I remember wondering why it took individuals so long to trust me and why they resisted some things that just didn't seem like a big deal at the time. Now I know it is because when every aspect of your life is controlled and the majority (or entirety, in some cases) of your relationships are dependent on scheduling, meeting goals, and professional boundaries, your life lacks that essential freedom and intimacy that allows you to feel relaxed and secure. I can't imagine living a life with 24/7 paid supports because even in the best case scenario where you bond really well with your staff and live a pleasant and fulfilling life, still all of this hinges on the success of the corporate structure that your staff are employed under. Simple things like wanting to purchase pizza for dinner or some new video games while they are on sale become a logistical nightmare when trustees need to be contacted during working hours (and sometimes these people take sick days or are busy), cheques written and cashed at a bank, staff availability and access to a vehicle need to be considered, and how this works with or works against your goals considered as well. Natural friendships end up being hindered by all of this bureaucratic mess, especially if an individual must have staff present with them at all times. If an individual has a staff that their friends or family aren't fond of, this too effects their ability to be open and comfortable with natural supports. I can only imagine that individuals crave the opportunity to talk frankly about their paid supports and staff, and yet if they don't have friends and family they can see privately on a regular basis, they ultimately get stuck in a place where they just have to keep it to themselves.
I became a natural support for an individual after I left Quest. It was astounding and unexpected how big the difference was between being her staff and being her friend. When you work with someone for a while, you get a rapport that can feel like a natural relationship at times. However, the freedom we have now to be able to catch up and not worry about language, boundaries, and the distancing necessary for a professional relationship with unavoidable power imbalances is incredibly encouraging. Now, not only does she have a safe space to discuss taboo subjects as well as her paid supports and get honest conversation from it, I can engage with her naturally and not worry about constantly hitting checkmarks and imposing a rhetoric of wellness. She can complain to me about her current staff, I can complain to her about my current work, and neither one of us is in jeopardy of losing our jobs or a valued relationship. She can trust me with details knowing that I wont have to report them to others and there is no pressure to "please" staff or the agency by getting things done. Of course I am still concerned with issues in her life just as I was as her staff, but now there is no pressure for herself or myself to be a miracle worker in "fixing" these issues. Maybe this individual didn't want to clean her house at 7pm on a Friday, but that's when she had staff. Now, she can get help from a friend on a Sunday afternoon or whenever works. She can show me things she is excited about like her pregnant cat or a new bong, and I don't have to respond to those things with "that's awesome, but is this a healthy choice?".
Individuals often do not have the freedom to make unhealthy choices without judgement. I might neglect to do my laundry and my husband will not immediately remind me of this and track these habits on paper. Individuals in supported homes have to live with the awkward disappointment of their staff when they neglect to do even little chores like laundry, because at the end of the day staff have an agenda to meet and a large part of that is help ensure that chores are done. This is not really the fault of the staff or the agency- things need to be done and with many individuals, if it isn't structured they wont understand moderation/completing these tasks "reasonably well".
Boundaries are easily the most difficult aspect of my job, set aside behavioral challenges. When individuals have explained their loneliness, struggle with intimacy in finding a romantic partner, and at times even stories of sexual abuse, it is natural that I want to connect with them on a level deeper than a compassionate script. When I say "I don't know what to say, I'm just so glad you've shared with me. Everyone deserves love and everyone has value, no matter your struggles and differences" instead of "I know what it's like to feel like you weren't designed for love. The moment you've begun to believe this to be true and start thinking about statistics, you've set foot on a slippery slope. You are loved and valuable, but I understand why you are feeling this way." I am excersizing a professional boundary and a degree of intimacy and genuine connection is lost because of it. This is a necessary boundary of course and I'd never deny that- the reality of this being a job is apparent because I wouldn't always do it for free, and as such there needs to be a level of disconnect so I don't take all of my work home with me. These boundaries are emphasized to protect individuals and staff from emotional turmoil should things inevitably change, and these boundaries are there to protect everyone legally.
There is no real option for counseling and addictions/abuse support for individuals without the vocabulary and understanding that professional and group therapies typically depend on. I know from years of trying to find this for individuals in Alberta that there is exactly one therapist with any formal education on FASD, and he retired a few years ago. Often times counseling can be disheartening for individuals because either staff can't come with them to help them navigate the conversation or to cue the therapist to use more concrete language, or counselors are simply ill-equipt for the modifications needed to support these individuals. This is, again, of no fault to the therapists themselves, but more so of the system. There is gaping hole in the community for disability-aware mental health, abuse,and addictions supports. Though I can be there as an emotional support for individuals, unfortunately I end up using glib phrases like "it's not your fault this happened to you" and just trying my best to navigate the conversation kindly. I am not experienced or educated enough to help someone in processing legitimate trauma. The closest I can get is when someone inquires about my tattoo and I can use that as a jumping point. I may have a grasp on the language to use, but not the technique, and this is where community supports need to come in.
Individuals who are angry, mean, self-deprecating, and appear to act out in malicious and petty ways are often acting out because of years of unprocessed trauma and trust issues. Of course, having a disability does not mean you do not also have personality flaws. Some people are just more naturally petty or mean spirited than others, but nonetheless un-treated PTSD and trauma motivates a lot of behaviors in my field. Behaviors are always the result of an un-met need, be it emotional, physical, or mental. Boredom, not having enough control over their lives, emotional turmoil, medication side effects, loneliness, depression, and confusion are all very universal human experiences not limited just to those with a disability. We all exhibit behaviors to varying degrees, but most of us are not monitored and our behaviors are forgivable or kept in check by various natural supports like friends and family.
Over the years I have come to grips with the fact that the system I work in contributes to the trauma the people I support live with daily. Staff are not natural supports and while at the best of times they can be incredible and valuable companions, nothing compares to the stability and dependability of the love and honesty of a friend or family member. I was raised by a family who loved me unprofessionally, friends who enjoyed me and had no shift duties, and a world of community supports which spoke in my language and had (mostly) reasonable expectations of me. I live with a great deal of freedom and self esteem, and I am very very grateful for it. People with disabilities can and often do live fulfilling, happy, and meaningful lives with friends and family, but they will always have to accept the reality of the frustrations and trauma that having paid supports subjects them to. For every instance where their staff helps them and provides them with genuine compassionate care and support and even joy in activities they do together, there is another instance where that staff leaves unceremoniously or they get a staff who cannot bond with them in this same way.
Dr. Gabor Mate, a Canadian Neuroscientist and Addictions Counselor famously says "When you see a person with an addiction, ask not why the addiction, but why the pain". I believe this quote applies to behaviors too. When I find myself frustrated at the seemingly unusual behavior of an individual and when I would wonder why I wasn't being trusted, it helps to ask what experience taught them this. It helps to remember this in context, and while I recognize that the system I work in does harm as well as good, I also recognize that it's the best that we can do for now. All we can do in support work is reach out with kindness and try and support both wellness and joy in their lives. I hope that in the future I can advocate for the people I support to make more natural connections and have the space they need to be honest, uninhibited, and receive the freedom they deserve to voice their experience being supported in this industry. I believe that their voices would be an incredible resource for constructive criticism and they have to be heard because right now, frankly, they don't have the platform to advocate for their own rights. I hope to see this change, some day. Even if I am somehow involved in giving someone this platform and I hear back that all they did on that coffee date was complain about me and my colleagues, shit they have that right every bit as much as I do. If I can come home and complain about having to watch Pokemon, they should be able to complain about having to listen to the Fallout soundtrack in my car, plain and simple.
Ask not why the behavior, but why the trauma.
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