The Overeager 'Helpers' You Meet When You Have a Disability
I started writing this post about a year ago after a particularly traumatic “breakup” with some people who had been close friends, but I didn’t finish it and sort of moved on, like I have in life. But the topic has been brought back up again with the release of the movie “Me Before You” and the issues it touches on. It is a movie about a man who becomes quadriplegic after an accident, the woman who is employed to care for him and ultimately falls in love with him, and the fact that he finds his new life so unbearable that he commits suicide so she can get on with her life unburdened. The problem I and many others have with this movie is that it reinforces the stereotypical views that society has of disabled people and disability — that it expects so little of us as people, that all disabled people are the same, that a life with disability isn’t a life worth living and that being or becoming disabled is pretty well the worst thing that could ever happen to you or someone you love, and that we are to be pitied.
Disability and chronic illness can bring out different responses from able people. Some are fantastic; they will ask what you need, or if you actually need anything, and not make a big deal out of having to accommodate our needs in their plans. There are those who distance themselves because they do not know how to act around us and cannot see a way of actively incorporating us into their lives under the new capacity as “complicated.” There are people who ignore it, and us, completely. Then there are those who see people with chronic illness and disability as a person/problem that needs fixing or helping, a wounded bird that needs sheltering from the world or a broken toy that needs mending — because we can’t possibly be capable of doing things on our own.
When I was 15 I was asked out by a guy I had met through a volunteer organization. He had apparently been working up the courage to ask me for a while and I had no idea. He told me that he liked me, that he wanted to care for me and protect me because he hated that I had health issues and my life was tough. I realized that while he may have been interested in me, he was probably just as interested in the idea of having someone dependent on him that he could care for and “fix” and to make himself feel needed.
My life then was somewhat complicated by health issues but it was by no means as complicated as it is now and this theme has recurred in my life through acquaintances, friends and people who want to be more. They think they are doing the right thing and are trying to be helpful, trying to fix me and protect me from the world without understanding me and my life or asking whether I need this help in the first place. That kind of “help” often becomes more of a hindrance, even if it comes from a place of good intent. As they say, the road to hell is paved with good intentions.
But how do you say no to a well-meaning person when they do not understand you and your situation? I have yet to figure that out, but it seems I need a new strategy; silence, frustration, suppression of that frustration and eventual resentment and irritated outbursts are not effective strategies. All that ever seems to result in is me becoming increasingly intolerant and withdrawn and ending up looking like the ungrateful and angry, bad person in the relationship. Keeping silent and not addressing the issue for fear of hurting the other person’s feelings or angering them does not work — their feelings will get hurt anyway because they believe they are coming from a place of good intent.
It is harder again to say no when there is history and love involved in the relationship, but as Mahatma Gandhi once said, “A ‘no’ uttered from deepest conviction is better and greater than a ‘yes’ merely uttered to please, or, what is worse, to avoid trouble.” If the help that is being offered comes from a place of misunderstanding, it is often not helpful. The thought is appreciated (mostly) but it would be more appreciated if the person offering help tried to understand the situation, tried to understand the person they are trying to help and what they need — if they asked and listened before assuming and acting. Communication is key, but it often gets overlooked or muddled.
Often, refusing forced help or explaining that it is not appropriate or could actually make things harder is met with anger and hurt, with the person implying that you are ungrateful. I asked a few other people with chronic illness and disability about this situation and their experiences with it and found that this theme of being given unwanted or inappropriate and forced “help,” with the belief that the person receiving the help should be hugely grateful for anything offered and then refusing to listen is not uncommon for us — in fact it is one of the most common issues we face in our interaction with our fellow humans who happen to be more well and able-bodied.
There are different personalities who seek out relationships with those they perceive as being vulnerable or needy, to fill some need of their own. In some cases, the need of the “giver” to provide help comes from a deeper need to be appreciated and showered with love in return for the “help” that is being offered and outweighs the needs of the recipient. It may come from the need to give their own life meaning by serving others, not a place of understanding and equality, so any refusal or annoyance on the part of the recipient is met with protestations of unfairness and ingratitude, implications of guilt and emotional manipulation.
There is a term for this behavior pattern — it is called a Martyr Complex: when a person exaggerates and creates a negative experience to place blame or guilt on another person, in order to feed a psychological need or avoid responsibility.
Sound frustrating? It is! But the martyr does not deserve your anger, hatred or pity — frustration, yes, towards their actions and attitude but they act as they have learned to, the need to be a martyr is subconscious, not active. The martyr may have had some past trauma that has caused this behavior pattern to occur; born from a desperate need to please and make everything alright or born from having to endure conflicts and take on responsibilities beyond their years.
People may go along with what the martyr wants at first out of guilt and loyalty – after all, they do not want to hurt someone they love, someone who gives seemingly so very selflessly. But those are not good enough reasons to continue succumbing to forced help; this behavior does not create strong, healthy, loving and equal relationships. It is a destructive mentality that leads nowhere good for anyone involved.
What it comes down to is this: It can be very difficult to maintain a relationship with a person who has an innate need to jump in headfirst to help or fix anyone and everyone without first identifying what help is required. It is exhausting for both parties and unless the issue can be identified early and dealt with and have boundaries set in place, it will end. There are few friendships to be in that are more lonely than one with a martyr. They do genuinely care, but they need to learn to care for themselves and take responsibility for their own lives before they can really care for others.
I am a strong woman and I do not need protecting from any and every hurt. My life is a bit complicated, I do know that, but my needs are straightforward and not difficult to work around in any way. I am not a broken toy or a wounded bird and I do not need someone to heal me unless they are trained to do so and I have sought them out for that exact purpose. The continual portrayal of disability and disabled people in popular media that reinforces stereotypes does us a disservice because it encourages the belief that we are to be pitied and need help whether we want it or not.