I have never worked with you before, and the prospect is scary, but not just because I haven’t done it before.
It is because I know that “home health care” agencies such as yours are entrenched in the idea that not being able to walk or verbally talk or dress ourselves makes us patients and also means your care fee is exorbitantly high because we don’t need or want companion care but to actually be moved. Your structure and approach indicates you think that is medical, whereas I think of medical as the fact that I use an IV to help me maintain blood pressure and need your help with that. But I’ve also been told that is too medical and can’t be accommodated by people without medical training, even though I only need you to hook it up. Yet the fact that I need your help to move is medical. It feels arbitrary to me, steeped in ableism so ubiquitous it is like air. Sometimes air quality is terrible.
Last week, your boss called me to say we needed a meeting. I haven’t responded yet because I feel vulnerable. The two of you are working hard and becoming a team. My team. A team I enjoy. And because they cannot find someone for the hours you are not on shift, they will ask why I don’t want to use a patient lift.
Close your eyes. Imagine hanging in midair in a lift you cannot move yourself. Imagine depending on a sling with straps that go through metal holes and must be properly secured Imagine, now that you know how we are prone to abuse and attendant moods, that you said or did something your attendants didn’t like, and they left you hanging. Imagine that your wheelchair or other equipment is a source of expressing your power, of movement, of escape, of freedom. And imagine you no longer had it, that it was across the room or even inches away, but you need contact with it to fully seize your power. Imagine how you might feel.
You might sink, knowing in that moment just how disabled you are, and how dependent you are on people to move you. Sure, you know it in other moments, but if your care is strong and people’s attitudes about your worth supportive, it isn’t a large part of your life.
Until…someone thinks it should be.
Until they say they know why you lost all your attendants until them because you asked them to get a number for you while you are on the toilet and can’t get away from them. Until you have to take a deep breath, knowing you are dependent, and work this out with them because you are in a literal desert miles away from any other help because you dared to want to go on a retreat.
Until they remind you again that you should be using a lift or that no one will do the thing you want or need and that when those who care for you die this could mean institutionalization because of the way you handle a chronic illness you know they will barely treat in a nursing home anyway, so try harder and again. Like you don’t know you’re at risk and just need enlightenment. And like that is the only option if you “fail.” Is it any wonder we can feel attracted to the freedom death seems to offer?
Is it any wonder we feel like our voices don’t matter?
Right now, my attendant’s supervisor texts me. She says “I want to confirm that you’re wanting to go to a mosque for a week because if so we need to find someone to assist you” I sigh. Would people listen better if I were able to walk? I told my attendant it was a monastery, and I said I wouldn’t keep him all week and we’d be back before he needed to leave. Why wouldn’t I?
Yet the text says that he can’t stay all week and that they would need to find someone to take me. Like going on a trip with someone you don’t know is something everyone does. I have done it because, rarely, something mattered that much. And when I have, people wished I had brought someone else while I wished the same thing. I no longer have the relationship I most miss for which I did that, and now feel it isn’t always worth it. But damn, I want to travel.
People flock to ads for travel, but they don’t flock to attendant care needed for that travel, and if we leave the state, technically those hours aren’t paid for by county attendant care programs because the care is not in-home. Another case of the medicalization of disability reducing our options. I’ve always wondered what happens when a disabled person who gets state financed attendant care assistance lives in a mobile home and leaves that state.
Policies are created. They are not immovable and neither are people with disabilities and illness. But we hear you talk about how you aren’t superwomen and how it’s hard. You tell me, when my spasticity goes down, that it is like moving a different person or that I feel lighter today. Maybe it is, and maybe it does, but I’m not a different person. I’m just stiff or looser. I try to tell many of you spasticity feels like weight, but you don’t understand, tune me out and overestimate the weights of those of us whose muscles are tight by about 40 to 70 pounds, I hear it a lot and have talked about it with people.
Superheroes do feats no human can do, and words have power that rivals them. If one person can’t do it, remember there are others, and every single one of them is a human. This is good for us to remember, because so many of us have done what we can to make it easier on you, from waiting to go to the bathroom until we have to go more so you don’t have to do it again shortly to staying up later to going to bed earlier to eating less or more, to scheduling our trips around your hours so we can do trips at all and being acutely aware it can’t run over your time.
We often communicate less when it appears you tune us out or more if we know it would be welcome. We get to know each of you, and we pay attention. And so, faced with choices about simple things, many things we do control, we may freeze or ask questions before answering, and this can be taken as a sign of disability. Sometimes it is, but this does not negate the fact that we know how we can be seen.
Attendant care is a dance. Dance can be holy. But it is not, no matter what is happening, care provided by saints with beautiful hearts by virtue of working with us. It is provided by humans with strengths and weaknesses, fears and courage and individuality,
So let’s talk about vulnerability. When you are providing care, we don’t necessarily like that we need it and we make accommodations for you because we need it and you are here. It’s common sense and common courtesy but we would like it acknowledged, whether you are here for a few hours, a few days, weeks, months, or years. Let’s talk about the fact that there is some belief that being a personal care attendant is by definition doing us a favor. While I appreciate your help, this is not what is happening, even when I feel like it is and even if you do.
Favors are not paid, and favors can but don’t have to carry expectation of return. So if you offer to buy me food, or pick something up, I want to pay you back and if I don’t have the money, I don’t want you to do it unless it is very important. You could do me a favor if we had a different relationship, or as we get to know each other and find out where the boundaries are. They are different for every relationship, regardless of whether it’s an attendant one or not. But please know you are not here to do me a favor.
That can create so much of wondering when asking for your physical help or ideas will be okay and when not, what line you hold for the point at which you, like anyone, feel this is too much and you specifically remind me that this is a job and I’m overstepping. I don’t want to misstep or misjudge this. None of us with attendants do. So please know we think about these things for you.
And know they are tied to lifts. You ask why I don’t want a lift?
Because I am more than my body, and I have learned finally that I am not less than it and that it matters. If you put me in a lift, I’m faced with vulnerability that has very little equal and if you do not fully respect disabled people and our lives first, before you ever touch a lift, we don’t want you touching it or us.
But we may not be the ones hiring you. We often don’t get to make this choice. We are in nursing homes and you can’t move us and you need a lift, and telling you how we feel about it can be beside the point of your efficiency because you have other people you are working for.
We are clients of supportive living programs or home health agencies or group homes, and we have no say over who works with us,. Better ones listen to our experience and take what we say seriously and change our schedules if needed and possible; worse ones withhold care for speaking up and we’re expected to be grateful someone shows up at all? NO! A Thousand times NO!
Remember, no matter the arrangement,you are working for us, and the person you are working for is in a lift relying on you. No favors. No “I have other patients and need to get this done fast” right now. Without each of us, you would not have a position. No uncooperative people, or people who can be touched and handled roughly because of the type of disability they have or what they have asked for in the course of their care. There are no people with whom this is okay. No people who are giving you a hard time by saying no because they want their braces on in a chair or lift on the way to the shower to protect their feet, even if you are going to take them off when you get there and its just down the hall. Down the hall has walls, turns, objects we know from experience our feet may hit from stiffness and leg extension. We are people with a need to get up. People who know more than you do about having a disability or illness that affects us.
So… Think about whether or not you would allow people to put you in a lift to see what it is like and how you feel. Think about whether when we ask you, or want to ask you and decide against it, to try being transferred the way we do with someone else, you think the request is appropriate or inappropriate, and then look at why. Your answer matters and should be respected. But feeling it is inappropriate acknowledges that it is vulnerable and crosses a natural boundary. This matters and needs to be respected for everyone.
A lift is not a mobility device. We do not have the same type of relationship with it that we develop over time with our equipment to the point that it is a friend and we know its personality and issues. At least, I don’t. Maybe if I used one, I would bond with it. But for many of us, it is something we deal with because of no-lift policies or difficulty moving us. The missing element is choice. If things were different, and you had a different policy, we, like you, wouldn’t use them. Policy matters, and policies can and should be able to change. Please keep this in mind, and move gently. Lifts are large and they jerk, and you need to be careful not to hit walls and doorways. You literally have someone’s life in your hands while using a lift. I know that by talking about this, I am potentially putting people in danger. People who dislike us, resent us, and hurt us do not go around wearing signs that indicate their feelings, and new knowledge and thinking creates new opportunities, whether for support or harm.
But silence here doesn’t benefit us. And so I speak. I know why you have these policies. I know you are concerned about attendant injuries. Know that we are too. We want everyone who works for us to be safe. But no-lift policies leave very little room for the myriad of situations in which disabled people and our attendants find ourselves or want to be. The time needed to use one is significant. In a fire or other emergency, they can lose you precious minutes. If they break, people are stuck and unable to have their needs met. So you need a back up plan, and you need to practice it and not depend solely on a lift always. Not using a lift can also simply feel more human and connected, but whether we use or don’t use one, we experience tremendous vulnerability when you lift us, and we do not like it. Often we have had our disabilities for so long that our disabilities are just part of us. This is why you may not hear us say we feel vulnerable, and plus we have to get to know you and we know you may not be here long enough to invest our energy. But we want, and don’t want, you to know.
We do not know you when you are first with us, yet we can’t get much more intimate than when you are lifting us save when we have sex or a romantic relationship. Which I have seen some of you laugh at when we express desire or you see us involved with people, and which we may limit because we need attendant care. Who needs an attendant during that time, even if we need your help to transfer to a bed or something else that can be related to dating or sex. We still frequently know you by scent, by perfume, by whatever products you may use,, and after you leave this job, we will smell that and remember you for a while. That is how intimate lifting can be, but yet we pay you and you are not friends, and so what you do is not a favor or true companionship. It is no substitute for a romantic partnership and so more room needs to be made by us and those who work for us to respect our relationships just as you want that respect.
And even though it is not a romantic partnership, it is a working partnership. Use lifts with this in mind. Imagine.