I think one of the hardest things for me to learn after I became disabled, was when to slow down, and when to ask for help. We talk about the energy cost that comes with living with chronic illness, but accepting it is still a process. Coming to terms with the fact that you can’t do certain things is hard. You’re determined not to let being sick change you, but you have no choice. You have to. Because you are different now. There are things you cannot do, and moving on and becoming yourself means coming to terms with that.
What many people don’t understand is that it’s not a onetime thing.
It happens again every time we have to ask for help.
Society tells us, as well as everyone in our lives, that we are a burden and that that is all we can be. No matter how much we learn that it is not the case, it is still hard not to internalize that message. The message is passed along in the media around us – with disability being presented as the worst possible thing that can happen to anyone, and in the reactions of people around us.
When Alyssa and I were together for example, it was not uncommon for members of her family to question her as to what good our relationship was with me being so broken. When she had called her mother to announce our engagement, what should have been happy news was instead met with a sense of mounting horror and dramatic exclamations of “no, no, no”. Later when discussing it with her father, the concerns about tying your fortunes to a disabled person came up again. When I was with my ex before Alyssa, so many people would tell me over and over again that I was lucky to have found someone who was willing to stay with me. I think the worst however, was when a friend who also happened to be Alyssa’s partner tried to talk me out of getting a dog to train as a service dog for myself by bringing up how much Alyssa already had to do around the house.
Although it was never flat out said, the implication was obvious. I was a burden.
That’s not to say that we are facing an existential crises every time we ask for someone to hold a door, or other relatively simple asks. What it means is that there is a cost for every time we have to ask for help. It uses up spoons. How high the cost is depends a lot on who we’re asking and how often we have to ask.
When we ask for help, we have to face that we are putting someone out. It’s a position of vulnerability. Having to ask for help puts us in someone else’s debt. If we have to ask frequently, that debt grows to the point where it might feel insurmountable. This feeling isn’t limited to disabled people either. Having to continuously ask for accommodations, or assistance, or for someone to complete some task comes with a mental cost – emotional labour.
Sometimes, in a relationship – romantic or otherwise – one partner finds themselves disproportionately having to ask for help. When discussing the unequal distribution of housework in cis het marriages this looks like one partner, usually the wife, having to constantly ask her husband to take care of specific tasks that he should have otherwise noticed needed taking care of. The need to think about what tasks need to be done and to point these out to someone who also lives in the house and is also an adult who should be capable of identifying these tasks on their own, takes mental energy. The cost is not only having to spend extra time noticing everything that needs to be done, not to mention the responsibility of managing everything to keep things moving slowly; it also comes with having to deal with being called a nag, or accused of being too demanding, and other such gaslighting. An alternate but equally gaslighting tactic is to claim that the asker is “better” at completing the task in question.
Even just forcing your partner to have to consistently ask for help is a form of gaslighting. In making someone have to ask, it frames the task as being the responsibility of the asker. If I’m asking for help in doing the dishes, for example, then that means that if the help were not granted then the task would be up to me to complete. Thus, the act of completing said task is to perform a “favour” for the person asking – regardless of whether that task was their responsibility to begin with.
Because of this favour-debt dynamic, often times the recipient of the emotional labour is under the impression that they are carrying their weight in terms of household chores and responsibilities, while the performer of said labour may feel increasingly overwhelmed and overworked.
When you’re disabled, certain tasks may be difficult or need certain accommodations, to be possible. It means we may have to ask for assistance from our partners more than we otherwise would. Sometimes, we need certain accommodations for things other than household chores. This can include, for example, a need to sit in a certain type of chair to reduce pain, or a need to rest frequently. It may mean needing to rest frequently, or needing your partner to give you an unprompted sign of affection once a day. It can mean needing them avoid loud noises or surprises, or to avoid certain behaviours.
In a long term relationship, a partnership, it’s natural to have to at first have to ask regularly for these accommodations, but at some point there should be a natural assumption of some of those needs. An attentive partner can come to understand when their partner requires assistance, and the things that they struggle with. A caring partner can then anticipate when their partner may require assistance, or when certain tasks may take up an unusual amount of their energy and make it difficult to complete other tasks.
When this doesn’t happen, when the disabled partner has to constantly ask for accommodations or help, it feeds an existing power imbalance that exists between abled and disabled individuals. Every time the disabled partner has to ask for help, rather than having help offered, it enforces the perception that they’re a burden. It increases the anxiety that their partner considers them a burden as well.
Having to constantly ask for help can also mean that we expend a significant amount of energy just on the asking. This is especially true, if the asking is made especially unpleasant. If you make us feel like we are a burden, then asking for help carries with it a much more significant energy cost. Perversely, this can mean that our ability to do things is hindered, resulting in needing yet more help.
I had a boss once, who would respond negatively to being asked for help. This boss expected you to be able to figure everything out on your own. If you were unable to do so, they would exact a cost from you for supplying you with the answer. This could include having to do the work in question for free, it could mean having to come in on the weekend to do some type of additional labour free of charge, it could mean having to purchase something for the office, there were assorted punishments that were exacted for needing help. Additionally however, while you were expected to figure things out on your own, you were also punished for getting them wrong. When you supplied the finished project, you would be told that you were wrong, and it was up to you to figure out what was wrong and how to fix it. Make mistakes too often, and you would again be expected to perform labour for free.
The result of this, predictably, was that rather than becoming more self-sufficient in finding answers, I became more and more anxious when approaching any task. The increase in anxiety, of course meant an increase in the number of mistakes, which resulted in higher punishments being exacted, which resulted in more anxiety; a positive feedback loop that ultimately ended with me having to quit my job when I realized that my last three shifts had been a continuous panic attack, and that I wouldn’t even get paid for the hours worked.
The abusive dynamic was so severe, that even half a decade later, I still have an instant increase in blood pressure, heartrate, and the taste of adrenaline, when I hear a certain ringtone.
This is an extreme example with a literal “cost” to asking for help and the ways the dynamic becomes abusive. Disability can come with additional burdens, but the disabled people are neither the cause nor the burden. There is no legitimate reason why having a disability should mean having to struggle to get by, make ends meet, or even survive. It is the result of a systemic ableism that expects disabled people to be grateful for the insufficient support they do receive since they dared to have to “ask for help”. It’s hard sometimes not to equate difficulty caused by the situation you’ve been forced into, with your own self-worth. Many disabled people feel personally guilty when their families struggle with money as a result of disability being insufficient to live on.
When we have to additionally ask for help, many of us feel guilty. We feel as if the cost of having to deal with us, isn’t worth the supposed benefit of our love and person. Then we feel guilty for “feeling needy” when actually we’re struggling under the weight of daily reminders of our supposed worthlessness.
We all look to our loved ones as a source of support and as reminders of the fact that we’re worthy of love and respect. In the same way however, that we struggle with separating the result of our oppression from our own value as a living being, let alone a human being, so too can our partners struggle with not blaming us for the hardships they face for being in proximity to us. It is not uncommon for people in various relationships with disabled people to lose that struggle. When this happens, the disabled person is at significant risk of abuse, even death.
One example of this is parents of autistic children who murder their children. The claim is always the same: that the impact of their disability was just too much to handle. Suddenly a lack of services becomes a valid excuse for murdering a child, for violating the trust of someone who depended on you. The thought never follows that the lack of services is imposed on the child by the same people bemoaning how its lack led to such a tragedy when they elect candidates who cut services further, when they ignore accessibility, and when they devalue our lives so far as to excuse our murder as excusable, understandable.
Disabled people face disproportionately high levels of abuse. Estimates provides by major institutions and studies suggest that 80% of disabled people will be sexually assaulted – 4 out of 5 disabled people will be sexually assaulted. When you break it down according to gender, non-men face an even higher, nearly universal, rate of assault. When you break it down according to disability, the more assistance a person requires, the more likely they are to be assaulted. The more likely they are to be abused.
What often isn’t discussed is that the reverse is also true. The more you are abused, the more help you will require, and also the harder time you will have getting said help. Abuse has long term consequences, including PTSD, anxiety, depression, and so on, all of which come with their own accessibility needs and energy drains.
One of the first weapons in an abusers arsenal is to play on the social perception of disabled people as burdens and the associated struggles with self-worth by playing on their fears. Forcing disabled people to carry the emotional labour of having to continuously ask for help manages to achieve both goals. People outside the relationship see a dynamic where one person is always asking for something, giving the appearance that the person in question is demanding. Paired with the ingrained bias towards conflating disability with burden, the perception becomes one of the “abled” partner being long-suffering and of the disabled person as being unreasonable perhaps even abusive themselves.
Meanwhile, the disabled person is made to feel the judgement of friends and of strangers. They begin to self-doubt, wondering if they really are being unreasonable. They will question themselves whenever they feel like they need something about whether it is reasonable for them to ask that. Often, the request is something along the lines of “please don’t intentionally set off my pain/symptoms/anxiety/etc.” It’s not uncommon for disabled people to overwork themselves, or do more than they should, in an attempt to avoid “being even more of a burden than they already are.” It’s not uncommon to ignore needs in an attempt not to create more anxiety for their partner.
The problem of course, is that when needs are not being properly met, that comes with a significant cost. It can mean an increase in symptoms, worsening of secondary disorders. It can mean significant exhaustion, making completing existing tasks even more difficult.
This pattern is worsened, when the partner makes it consistently clear that they resent being asked for help. That they consider providing help an intrusion on their time. Not only does the clear resentment make it even more guilt provoking to even ask for help, it means that asking takes even more energy since not only is the help not guaranteed, but even if you do get it, you will be made to feel like crap the whole time. The drain on the energy makes all additional tasks more difficult. It means you have less spoons leftover to do things, like finish projects or do things to earn extra money.
When help is promised, but then is still expected to be asked for task by task, it can sabotage goals and plans, since the spoon allotment was based on the presumption that since help had been previously arranged, the cost of requesting it didn’t have to be additionally accounted for. If you agreed to help with a project, and then see them working on it, you shouldn’t wait until they ask for help to offer it. Take some initiative. Go up to them, ask them what you can do to assist, or alternately, if the project is something that has clear or obvious tasks, just pick up and start working on the task you know they will have the most trouble with. Don’t force the act of needing help to have to be a big production.
In some instances, all of this can be the result of oversight and neglect rather than active or intentional abuse, however, even then, the consequences for the recipient can be heavy and can make mere survival significantly more difficult.
In other instances however, the gaslighting is then used to accuse the disabled person in question of being themselves abusive. To accuse them of taking advantage and expecting too much. The disabled person meanwhile is face with not only with insufficient assistance, but additionally start to fear that any request for accommodations is somehow unfair. Every time they ask for help, or experience symptoms, they are thrown into a spiral of self-loathing. Their own symptoms become a trigger, making someone who is already vulnerable even more so.
This is not to say that disabled people can never be abusive. Disabled people are not some paragons of virtue who can do no wrong. People who excuse abuse as being the result of disability are also doing harm. There is a difference however between being harmed and being asked to do something you might rather not do.
We’re not insensitive to the idea that taking on extra physical and emotional labour can be exhausting, but asking us to go without accessibility is not the answer. Disabled people have been working on pointing out the difficulties we face due to lack of accessibility and services in our societies, but as long as we’re the only voices pointing out this fact, nothing will change. The idea that we’re a drain on society is too ingrained in the social mind for people to react to our calls for help with anything other than the assumption that we’re lazy and are just looking for handouts.
When abled partners take out their frustration at the difficulties imposed by society on disability on us, they’re just continuing the cycle. Instead, they should use the privilege and sympathy they garner from society to help speak out on our behalf. Abled partners in particular, are more likely to be listened to than disabled persons themselves, and expecting us to fix all the problems is just another way that the emotional labour of ableism is put entirely on our shoulders.
Sit down together and make a list of ways to reduce the workload around the home. Perhaps you can look into getting a cleaning person to come in and help manage some of the household chores. Perhaps you can work on making a bunch of frozen meals together so that exhaustion doesn’t need to mean eating out.
Most importantly though, stop treating the disabled person as though their disability is somehow separate from them. I might joke about my crohn’s and my guts being a separate entity, and I can laugh off when others make jokes about hating my guts when the context is them causing me pain. But when my disability is invoked when facing a hardship caused by ableism – like financial instability, like having to pay for medication, like being unable to perform certain tasks – then jokes or comments about how you hate our disability, ends up really being jokes about how you hate us.
I can’t separate myself from my crohn’s. I can’t take off my autism and adhd like a coat to hang up when it’s too warm outside. I might be more than my disability but that doesn’t mean that it isn’t a part of me, and when you hate it, you hate me too. When talking about your frustration, when discussing difficulty in handling a higher assortment of tasks, – and regardless of whether you are talking to us, or your friends and family members – remember to direct your ire in the right direction: namely towards the society that makes this be the case.
No matter what, I’m always going to need accessibility. That won’t change. Someone who wants to be a part of my life needs to see it and not just accept it but work with it. In the same way that good romantic partners learn what makes their loved ones happy, comfortable, and so on, it’s important for partners to learn our disability and our needs as well. Figure out when we are more likely to need help, and work with us to minimize the instances that require us to ask for help. Work on being approachable when it comes to asking for help, so that we know that if we need to we can.
This isn’t the same as helping someone against their will, or forcing it on them. I’m not talking about physically lifting them or treating them like they’re incompetent. What I’m talking about are the subtle ways that partners show each other that they’re paying attention and that they care. For example, if you know they’ve had a long day and are likely to be out of spoons, offer to make dinner, or suggest ordering food before they have to tell you that they don’t have to spoons to cook. If you see they’re struggling with something, offer to help them with it. If there is one request they make consistently, do it without being asked. It’s little actions like this that let your partner know that you actually see all of them and care.
I want to end on an anecdote, that I think illustrates the importance of this and the sheer impact it can have.
I recently has a friend visit and stay with me for a few days, from out of country. Before this friend came, they specifically mentioned wanting to help me with some of the tasks I’ve been dealing with: specifically trying to combine my office with a bedroom in a way that leaves me able to function. When they arrived, they made a point of offering help and from time to time, just figuring out something that needed to be done – like collecting empty coke bottles – and doing it.
Just knowing that I had the help here in reserves; just knowing that if I needed help I could ask for it and not have to face exaggerated expressions of resentment, discontent, or other clear messaged that I was imposing, it energized me to the point that I was able to get three times as much done on my own, as I had before or even after their visit. Just knowing that if I needed help, it was there, reduced the spoon investment of each task. It wasn’t until that visit that I realized the sheer extend to which the emotional labour of having to beg for help, or of being unsure of getting any, cost me spoons and resources and kept me from being able to get what I needed, done.
It’s all about trust. We need to know we can trust you to have our backs. If not, our mental energy is focused on protecting ourselves and surviving rather than on thriving.