If you haven’t read genderbitch’s recent post on Love and Chronic Pain, please do. I’ll wait.
Read it? Good, because while I might talk a little about chronic pain, this post will be more about that same dynamic and Developmental and Cognitive Disability.
As I mentioned in the comments over there, I do have Fibro Myalgia, and I do deal with some of the Chronic Pain issues. I have had to deal with the overly solicitous responses, as well as the “solution oriented”/”fixer” types. Since Genderbitch’s post mainly talked about the former, I’d like to give a run down of the later. Particularly as it is this type that causes me the most conflict with my other disabilities.
The “fixer” is that friend/lover/family member who not only talks about how much they want your pain to go away &c, but who seems to be proactive in coming up with ways they could fix it. In some of my relationships with this sort, it bordered on compulsion. They suggested things ranging from an insistence that I “focus [my] energy on survival”/”drop [xyz] to work on [abc].” Too often, they have *insisted* I make drastic changes/take drastic measures that I may or may not have already tried or which might not have scientific or “best practice” basis.
I can only assume that Genderbitch’s reasoning in her post is correct as to why this happens. What I have to add is what this does, particularly for those of us in systems where we are taught passivity at an institutional level. Namely, in the DD and MH communities.
One of the things I find most unfortunate for us is that the way that we are treated or served is very focused not on us, but on other people’s experiences or perceptions of or about us. Because of this, a questionable standard of compliance is sought- and objections addressing how a treatment does not work are labeled ”non-compliant.” Even in cases where it is not done formally, it is held over the heads of people whose ability to stay in the community or receive assistance from services to food stamps is dependant on a case worker looking over our “transcripts.” The thing they are looking for? “Compliance” to the service plan.
So we face a heavy societal bias against standing up for what we need, and we suffer for it. We wither. When we are finally asked to focus groups or advisory councils, many of us don’t know *how* to speak up. And so policy makers assume that we are disinterested or even unable to be articulate about our needs.
When our friends and families engage in active pity- because, solicitous or fixer, both are- they are perpetuating this within us. They rob us of the ability to engage in identifying our actual- rather the externally perceived- needs. Both types rob us of the ability to ask for what we need when we do manage to identify it. And Pity too often denies us the ability to engage in what is ours to do, eventually leaving us without the skills when we need them most.
I am an Autistic, as well as someone with bipolar disorder. I have my own experiences of this, and my own strengths and weaknesses related to who I am- and it’s important to note that they are my own, and are not uniform to any other person’s.
I have issues with Executive functioning. I might be a lot more organized on the page, but my thoughts and ordering are jumbled in person. When I have a task to do, I need the steps broken down- sometimes more and sometimes less than people tend to do. Sometimes, I might need supervised to make sure that I don’t become “lost” in a task. I have difficulty judging and comparing myself accurately to a standard of performance or behavior- and even more so if it’s one that involves knowing how other people will see it.
All of these things mean that I might need help. I might need supervision. but what I do not need is the people I love and look to as my support system deciding that the best way to help me is to take command. I don’t need them always feeling that they must feel sorry that I cannot do certain things sometimes. Nor do I need them to decide what it is I can and cannot do.
What I do need is to feel confident that I am safe in asking for help. That the act of asking for help will not rob me of your view of me as an independent- and inter-dependent- being. When I say, “I need you to sit here with me while I work on this myself,” that you will not become a dictator of what I am doing. That when I struggle with a form, you neither abandon the hope of my understanding nor become so obsessed with helping that I am made “unnecessary” to the process. That I can trust you to trust me when I say, “I can do this, and this is what I need.”
I might not always be able to recognize my needs, but when you become the only one or even just the primary one identifying and confirming* my needs, I will not be able to learn. Nor will I be able to gain the self confidence that will help me stand up and ask for help when you are not there. My self determination and my self direction does and will suffer when you allow pity to perpetuate the passivity that a broken system teaches us.
*On Confirming needs: some individuals might have difficulty expressing needs, or in specifying needs. For these individuals, it is important that their support systems confirm the needs that are identified with them, especially when the initial identification is not made by the individual themselves. “Johnny” might not be able to express a certain need, or “Susan” might not be aware of the skills she needs in order to move into the community. Neither case negates the need to have the individual involved, and both cases a support system might need to ask for confirmation in a form appropriate to their assistive needs.