Which relationship has taught you the most about yourself?
Relationships are hard to navigate for everyone, but there are certain relationships that are harder to figure out. Most people automatically think that it is a romantic relationship and that it is hard to maintain. But for me, my marriage is easier than professional relationships, specifically between me and provider agencies for people with disabilities. These are the agencies that have us under the spell/ belief that they will help us have a better, more manageable life.
However, that isn’t always true. In every occupation, there is a pyramid, and human services are no different. The difference is that in other businesses or corporations, you expect the “brand” and CEO to be the top, but in human service agencies, you would think that the pyramid is flipped. Individuals on top, then DSPs, and so forth. However, that isn’t what most of us experience.
I myself have had to leave 3 different provider agencies because I am not a priority. You would think that the money they get from my insurance would be something that would encourage them to make me/us a priority, but it’s not! I suspect it’s because my disability isn’t “severe enough” for them to take me seriously. I had one agency where the executive director said to me, “Tish, we are trying to provide services so that every person can be at the same level that you are at.” Judging from the smile on his face, he was pleased with himself til I asked, “What supports do you have for them when they do. Having a DSP for 4 hours two days a week wasn’t enough for me to live/ thrive on. I never have rides to appointments, or a way to get to grocery stores unless I walk clear across town and pray I don’t have a seizure in the street.” (which wasn’t an exaggeration, as I have had seizures in streets many times! My seizures are triggered by temperatures.) “That’s why your voice matters, Tish,” and then he excused himself from the room. I’ve had other agencies who have found me good workers but run them away based on how they are treated by agencies. Or people I have simply fired for being grossly unprofessional (yelling across quads to pull up their pants, or almost getting into 3 accidents in one day because they wouldn’t get off the phone, etc.)when I needed them to be.
Turnover in the field is extremely high, so quite often other individuals and I are stuck with the thoughts: Should I stay or should I go with another agency? Do I keep what I have, knowing what I know, or do I go into the unknown and hope I find better? These thoughts have been my own personal version of a hamster wheel that I can’t get off of as of late. But these questions are not the hardest ones for me to answer; the hardest ones are these: What is right for me? Where do I start? And who can I trust? As a disabled person, these shouldn’t be the hardest questions; they should be the easiest. Especially who can I trust?
What’s right for me? Should be met with “What do you want for yourself or what do you want to accomplish?” then go from there. Next question: Who can I trust? Should be answered by this: “your circle of support, which should include the agency staff. The people who truly want to help you succeed, grow, and flourish. The people that YOU picked, that YOU trust. Where do I start? Answer: Within yourself, then take it to your circle. Start by stating what your needs are and what you want and expect from the agency. If you can’t do any of this within your agency, then your answer to the question Should I stay or should I go, should be GO!
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