Ever since I could remember, I was always treated like the enemy in my relationship with Bill, mostly in part to my perspective of “disability means jack shit” and that nothing should stop you from living a good life, not even staff people.
But sometimes, things got in the way. Or in some cases, they didn’t intervene enough.
I remember my early years with him, having the respect I deserved when taking him places. I was always careful, making sure this precious cargo of a man would make it home in one piece.
A few of my friends caught on to our relationship and invited him to go dancing, to a strip club, to a dorm party, to a local bar. He was an adult, and as long as I was with him, I thought we would have it made.
Only we didn’t.
One night, I got into a fight with a guy in our group who tried to hurt Bill, and I was since labeled a bad guy, even though it wasn’t my doing. That small incident led to me being treated like a damn drug addicted step mom, going to relationship therapy and having curfews. He was placed in day programs he didn’t like because he was treated like a baby, placed at a table to color with people who couldn’t function beyond a toddler status. As much as I was his voice, I was silenced, threatened with fake restraining orders, told constantly how bad I was for one bad night in college. As for him, he was a pushover even though he always preached self advocacy. Go figure.
I left when I had the chance. This third-party nonsense got to me and it made me sick to my stomach.
Years went by and I learned to adult somewhat. I got my own place and paid my own bills, I proved myself worthy to take another chance at patching things up with him. I was ready to be taken seriously.
I remember coming back to see him seven years later, his staff a fresh new team of helpers with open minds and open hearts. My first visit was well taken care of. Our itinerary planned for the whole week, no issues whatsoever.
Except that sometime there were shortages. And sometimes neighbors would take a top priority over him, such as the case with the second trip.
One neighbor a particular had various issues that to me would require more intervention than what the place he lives at would offer. His neighbor was violent, intrusive, and very needy. This neighbor even walked in on me and Bill getting intimate. The neighbor walked in, didn’t say anything, just plopped on the recliner and turned on Netflix while me and Bill in various stages of undress looked at each other in awe.
The staff didn’t seem to do anything, as this became the norm of the visit, the neighbor yelling and banging on Bill’s wall at 3am. Mostly because there was no night staff in the building and he appeared to be suffering from hallucinations.
The daytime became a juggling act of six house mates with less than two or three people running the show on a good day, usually Bill and I would be left in the dust, even though I offered the staff the option of meeting me downtown with Bill while I took the bus in order to help ease things up a bit.
But nope. Last time I was there, we were always left alone. Although loneliness was a good thing, it was also a bad thing. We never got any community time that week other than Bill going to work and the conference I spoke at. While his neighbors got to go to Subway and coffee shops, we stayed home. Mostly because Bill and his equipment didn’t fit in some of the cars. Those four walls are like our prison. We were happy together, but I was dying a bit inside. Nobody should live a life this sheltered
I remember one day on my last trip, Bill was being showered and the staff was called in to have a meeting about the next door neighbor going off again. Bill sat there for 20 minutes unattended, as I was told not to bathe him in fear I would hurt myself or him, despite my years as a paraprofessional.
I finally had enough and finished with his bath, even though I was scared shitless I was going to break him. But I did it anyway. I have to learn somehow.
I remember the day I left for the last time, the staff was nowhere to be found, dinner wasn’t cooked, and I was left rummaging for last-minute Uber fare for my grandmother in Pennsylvania so I could go home since my ride, one of the staff who volunteered,called in sick and had to bail out on me.
Staff shortages are apparently the norm in many places, due to budget cuts and high turnover rates. It just so happened that week was plagued with one, mostly caused by sick leave. So unfortunate, good thing Bill and his neighbors didn’t need any major supervision or medical intervention. God, I can’t imagine if they did and this happened.
A few months passed since the last trip and I came to learn that Bill was being set up on play dates from the staff, involving a girl who has direct relations with the person who runs the agency. Bill told me constantly that although they were friends, he just didn’t know how to say no to her. She would constantly talk mean things about me and would tell him that he was not allowed to have a relationship with me. My guess was that Bill was afraid to stand up for himself because of the power this girl had on him. This became the last straw for me. This weird hierarchy turned fatal in our relationship.
It seemed to me that the early days of our relationship were repeating themselves.
Because of all this, we became no more.
I feel as though staff people shouldn’t have a bearing on what a person wants to do with their lives. As long as that person is able to give consent, they should have a right to pursue whatever dreams they have and not be forced into a bubble. I saw Bill as an adult, some people didn’t see it that way.
Now I understand shortages, issues with neighbors, and whatever life throws their way. But I feel like there were a lot of things wrong with the way Bill and I were treated, some things intentional, others a result of unfortunate circumstance. Bill sometimes was treated like an inconvenience, I was treated like an enemy, with the exception of the last two visits, which we sometimes found ourselves as an oversight to an already overwhelmed staff.
I feel direct support needs a lot of work to support everybody who needs it, there shouldn’t be a hierarchy of needs, there needs to be an ample amount of people and an ample amount of hours for each one. Bill’s neighbor took three people to take care of him the day of the shower incident,. Bill and I were left with nothing during a pretty awkward time. Stuff happens, but it makes me wonder how often stuff like this went down.
A friend brought up a good point about some of the issues I had on the last trip. He thinks it’s because the staff saw me as an easy way out for the week. An able-bodied wife figure who can cater to his every whim. I was on vacation, I shouldn’t have been treated like unpaid staff. But I did so anyway because I love the guy and I knew the trouble his neighbor would cause if heaven forbid he didn’t get the staffing he needed. Plus, if this was going to lead into us moving in together, I had to learn the ropes, although I would of perfered a training session over winging it any day.
Honestly the whole situation sucked. I was doing everything in my power to find a way to get him out of there because I think he deserves more than what life gives him. But he was so originally brainwashed from our ealry days and so used to the life that he lived, that change didn’t come easy with him. I would move mountains for the guy if given the chance. Giving him the perfect life was my only motivation to be focused on making a change. I wanted to be his hero because at times, he chose not to advocate like he was so well known for years ago. Seeing him like this scares me still, even though things went downhill with us the way they did.
I just wish the issues we had with staff were fixable. But due to several budget constraints and issues with other people in his building, my idea of a perfect life with him was shattered.
I just wish people with disabilities were given the same opportunity as everyone else with the right amount of help needed to reach their goals. After 12 years, progress has been made, but quite frankly I feel as though it’s not enough.
I can only hope things get better for all involved. From Bill, his troubled neighbor, the overwhelmed staff, and everyone in between. Everyone should be able to live life on their terms and have the help they need to get there, and that help should be a lot easier to access, both from a client and staff point of view.