The Problems With Help You Didn't Ask For

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Most of the time, it’s kind of clear when you should be grateful. For instance, if someone gives you something, or even holds the door for you, you say thank you. But what if you didn’t actually want help? What if complete strangers kept insisting on giving you a hand?

Haddayr Copley-Woods says she's been trying to figure out how to deal with that for years, since she was diagnosed with multiple sclerosis. For the helpers, it’s a nice thing to do. For her, it’s patronizing. She resents it, and also feels guilty for being resentful.

This transcript was edited for clarity and length.

Haddayr Copley-Woods: I have a pretty widely fluctuating condition that causes me to, well sometimes I walk around with no aid. Sometimes I need crutches and sometimes I need a wheelchair.

Anne Strainchamps: How does that affect you from day to day?

HCW: Well, it’s definitely real and present in my life. It’s been slowly increasing real and present in my life for about the past four years. So I am relatively new to it. It affects me in that I am most of the time seen as a disabled person by everyone around me.

AS: Did you notice any changes in the way people interact with you when you first started using the crutches and the wheelchair?

HCW: Oh yes, yes. That is where the unwanted help began.

AS: What do you mean by unwanted help?

HCW: Well, if you were to see someone easily and fluidly opening a door and walking through it, you would probably not suddenly panic and say, “I’ll get that” run over, fling the door open and then stand in their way. But if the person was in a wheelchair you just might. You might find yourself doing that and that is the sort of unwanted help I mean, either panicking or disrupting a disabled person who is trying to just go through their day or opening a door perfectly helpfully when the person was capable of doing it themselves.

There is so much of being disabled that genuinely makes me feel helpless that it is very important to me to do the things that I can do. Very often when I am in the chair I will have people run over and push the elevator button for me but sitting in a wheelchair doesn’t actually affect your ability to push an elevator button.

AS: So it is people offering to help and thereby patronizing you that you find actually more irritating then people say ignoring you or avoiding you?

HCW: There is so much about being disabled that involves society’s assumptions that you are helpless and that you need to be an object of charity. I have actually had people come up behind me and grab the back of my chair and start pushing without saying a word, which is really shocking and upsetting. Imagine if you were walking up the stairs and someone just thought you needed a boost.

Pretty much most people who approach me assuming that what defined me is what I cannot do, that’s emotionally exhausting.

AS: So what do you do when people make these unwanted offers of help?

HCW: It depends on the day and it depends on the person. There have been several times where [I was helped by] people that society treats as if they are helpless— perhaps elderly people. When one of them wants to open the door for me, I am very often extremely gracious because I know they are finally getting the chance to open a door for someone else. Most of the time, I am not the kind of crip who is going to lecture a stranger. Most of the time, I grit my teeth and I try to be pleasant.

AS: You don’t think that people are sometimes simply trying to be kind and just are being very awkward about it?

HCW: You saying that reminds me of the time that I remember with keen regret. When I was able-bodied and I knew myself enough at the time to know that if I were to become disabled I would really resent strangers constantly helping me when I didn’t need it. And I was driving down the street — and I still remember exactly what street it was — and there was a man in a manual wheelchair struggling against what had been a very sudden snowstorm. I saw him and I thought “I don’t want to insult him by offering help” and I kept driving and I wish I could go back to that moment and at least pull over and offer help.

AS: I wonder how much are these questions talked about in the disability community? For instance, did anyone give you advice how to respond when a stranger grabs your chair?

HCW: You know, this is almost constantly discussed. A lot of times we will just share these stories because sometimes it is hard for someone who isn’t disabled to understand how angry an interaction like that can be, and so we will tell each other and then we will sort of laugh and sometimes we will ask for advice. And it is very hard based on your personality, based on what region you live it, based on how accessible your town is, it seems like there is a different way to deal with it. Minneapolis is an incredibly accessible town except for the snow. If you live in some older towns or towns that do not enforce the Americans with Disabilities Act (ADA) as well, you need a lot more help from strangers maybe to get over curbs and things like that.

AS: Are there ways in which people can offer to help that do work for you?

HCW: I think that it’s very individual. In my mind, if at all possible, imagining that a person with a disability does not have a disability and just watching for struggle and offering to help seems to make the most sense. There have been times when I have definitely needed help if I am in my wheelchair or in one of the scooters at drugstore or something, and I need something on a top shelf. There is something that I think binds us together ask a person who is just walking along, “Would you lend me a hand? Would you mind getting down that aspirin for me from the shelf?” and they say “Sure” and they get it down. And I feel good that someone cared enough to help me when it wasn’t their job and they feel good that they could connect to another person in this way.

I think that is a wonderful way of connecting and of helping each other. When you are genuinely helping people with what they really need, it is part of what makes us human. It is part of how we became human.

AS: It sounds to me that you are somebody who really values your independence. Has it been a challenge to learn how to ask?

HCW: Yes, and I think that’s really important to almost every American that I know, being independent.

For me, in particular, I am an extremely, extremely physical person and I still am. I still work out probably more than most. I know that my physicality is probably what attracted my spouse and especially when I first became disabled, that was difficult not because my husband liked me any less, but I was afraid that it would change who I was in a really fundamental way.

It turns out that it didn’t, but I do need to ask for help and have only been disabled for four years my house is still set up for an able-bodied person so if I am having a bad night I need to be in a wheelchair I need to ask for help to get almost everything down. Just in basic things: if I need drink of water, I have to ask my spouse to get me down a glass. And I don’t like that. I don’t like that at all. It makes me feel less of an adult. Even if it is necessary. I really need that water and then there are times I am hit so badly I need for him to drag me up the stairs so that I can get up to bed.

Asking for help and receiving help from someone who you have a sexual relationship [with] … that takes some negotiating.

AS: What does he say?

HCW: Yan is an amazing person. He is always willing to help. We have had a few moments where I became angry that he didn’t anticipate something that I would need. I always need my wheelchair in museums, for instance, and he very kindly loaded the wheelchair into the car for me and when we got there, I saw that he had not checked the tires. You really need to fill them every time and he hadn’t done that. And I yelled at him. This is so embarrassing to remember. I was just so angry that he hadn’t anticipated that need for me. So I started taking for granted that he is going to assume certain things. We are still trying to negotiate those sorts of things.

AS: Is part of the difficulty for you in being able to ask for help that it feels humiliating?

HCW: Yes, yes it definitely does. I mean, multiple sclerosis is a progressive disease. I am assuming that I am going to be needing more and more help. And I hope that we will be in a financial situation where I can actually hire people to do some of the really personal, intimate things that I would just prefer my spouse wouldn’t do. I feel that having a barrier between those things would help me to feel we are in a more equal relationship, but we may not be able to afford it.

He might need to be doing a lot of the intimate things —the bathing, bathroom things — for me as we get older. I am very nervous about that. I think when you are in an ongoing relationship with someone when one person is doing almost all of the helping, it’s very hard not to constantly feel beholden. I have not figured out how to negotiate that. That's a very uncomfortable place to be in.

AS: Sounds like it is a question of grace. How to accept a gift or help with grace.

HCW: Yes, It is very similar to having to accept a compliment. I have learned how to do that. I am confident I will learn how to negotiate this with Yan. So far, I am still working on it.