Chronic illness, welfare and trolls…oh my!

Chelle HopeChelle Hope is a writer who is, regrettably, finding less time for being idle these days as the demand for attention from her inner voice grows louder and more urgent.  As a lesbian with disabilities, she is interested in how identity informs how we see ourselves and others.  In this week’s guest blog, she responds to some of the less than helpful tips offered to people who cannot work due to chronic illness.

People with chronic illness sometimes are not able to work and support themselves financially, so they have to deal with WINZ (NZ’s social welfare dept.) on a regular basis.  Unfortunately, a number of people find it appropriate to comment on this kind of situation.  It’s hard enough dealing with WINZ, harder still is coping with the pure bile that spews forth from those who refuse to acknowledge any difficulty and disadvantage that a person might have in this life, or that society is responsible for helping those people who need it most.

Here are a few not-so-helpful tips that get offered (and my response to them):

Don’t Read The Comments

Generally that’s very good advice that should be applied to almost anything you read online.  But sometimes it’s important to read the stories of others who had been through similar experiences of being frustrated, struggling, impoverished and feeling helpless and hopeless.

Unfortunately it tends to be the trolls that stick out.. Don’t read the comments: Yes. Fair enough in most situations. However when you want to affect change, it’s important to know what people are thinking. Societal attitudes are a part of the problem and can also be part of the solution. That’s what social change is all about.

If You Can Use [Insert Social Media Tool Here] You Can Work

People with chronic illnesses can feel marginalised to the point of invisibility, especially if we are unable to work. Blogging and social media is one of the ways in which we can feel empowered. We can tell our stories in our own words and in our own time. We can write when we feel up to it physically and psychologically. Crucially, we can get feedback, suggestions, guidance and support from those who read what we write.

For many of us, it is the first time we have been able to share our innermost thoughts in any kind of coherent way, and it can be the first step in discussing issues that affect us in the real world. We don’t have the time or the energy to talk through everything that has an impact on us in our day to day lives, and there might not be anybody there to listen even if we did. Blogging is a lifeline for some of us. It can make us feel supported and less alone. Think about that next time you make a thoughtless comment suggesting that we should just stop whining, get a job and get on with our lives.

You’re Just Lazy

Those of us who have chronic illnesses can easily internalise the idea that if we are not turning up to a place of work at least five days a week, we must be lazy. I felt this myself for many years. After receiving my first class honours degree, I started looking for jobs. I worked part time for a number of years in a job I loved. I did other freelance work too, and I volunteered. I wasn’t busy enough. Everyone around me was busy and talked all the time about how busy they were. I felt guilty that I wasn’t working more, and I also felt left out. I wanted to join in.

It wasn’t until I tried for a career in teaching that I realised I was never going to be able to work in a ‘normal’ job. This was the turning point for me; I knew I wasn’t being lazy.  We need to accept that for some of us the consequences of trying to work full-time may include making a person sicker. We need to accept that forcing a person into work may indeed, for a small number of people, lead to death. That’s not being dramatic; it so nearly happened to me that I question every day how I’m still here.  So next time you feel the urge to tell someone with a chronic illness to get off their lazy behind and get a job, have a bit of a think about what effect that might have on a person.

If you stopped feeling so sorry for yourself and put that energy into work, you could get a job

This is often said to people who have been brave enough to share that being chronically ill has led to depression or that depression (or another mental illness) is a chronic illness for them. Well, they are right about one thing: depression takes a lot out of you. It takes a lot of energy to be so depressed that you can’t leave the house. Only the most ignorant person with their head firmly in the sand doesn’t know now that depression is not about feeling sorry for yourself.

Often people assume that those of us who are unable to work are sitting around feeling sorry for ourselves. Actually, many of us are good and productive members of our community. Some of us volunteer, we support our friends, we are valued family members, we have hobbies and interests, and we care about our communities. We do these things because everybody needs meaning in their lives. Rest assured, when you tell us to get over it and stop feeling sorry for ourselves, you are part of the problem, not the solution.

What’s your problem? What’s wrong with you? What’s your disability/impairment/condition?

Just a quick tip: Only the last version of what is essentially the same question is acceptable and only when it’s relevant to the conversation. Even then it’s up to the person just how they want to answer. In the context of employment, I and others with disabilities and/or chronic illness get very used to follow up questions about how our illness or disability might affect our ability to work. We are very aware that these questions are asked so that you can assess our suitability for employment and judge us accordingly.

Most of us experience a long period of utter devastation, sometimes even leading to depression and anxiety, as we go through the long process of coming to grips with the fact that we can’t hold down a job because our health will either be compromised if we do, or will get in the way of being able to do our job; or a combination of the two. Many of us have tried to work in various different jobs, and each time it doesn’t work out our self esteem, self worth, in fact our entire sense of self, takes a battering. Eventually some of us get to a place where we are ok with who we are and we accept our new circumstances, though many of us would still give anything to change them. You should know, it’s not up to you to decide how our chronic illness or disability affects our ability to be employed. Through experience, we have become pretty good at judging that for ourselves.

Pretend Like You’re A Good Person

We are not idiots. We know some of you are judging us. We know you will probably use our stories against us. We know other things too: We know that we don’t have to justify ourselves to anybody. We know what we are capable of. We know that our stories will help some to find strength and others to discover a way through. We are living our lives in the best way we know how. We will not apologise to anybody for having to accept support from the government or anybody else. It’s not our fault. We didn’t ask for this. If we could change things we would, but many of us can’t. If you are judging us, you are changing nothing and you are helping nobody. You can and should change your attitude and your thinking. Pretend like you’re a good person for a bit. You never know, it might stick.

This piece was originally posted on Chelle’s blog.

                                                                                                                                                              

Each month DPSN features one or more guest bloggers with a unique take on diversity.  We also repost relevant blogs from other sites, with permission.  If you’d like to write for DPSN, or know someone you think we should contact, please email barbara@diversitynz.com

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