I’m a Peer Counselor for People with Disabilities

Hidden Labor Series: The Value of Work in Which People with Disabilities Help Other People with Disabilities

By Gong-jon [“Coexistence”]  Published Nov. 14, 2019 Translated by Marilyn Hook

※ As a co-organized project with the Women Workers’ Writings Association, Ilda is featuring interviews with women whose work deserves a closer look. The Hidden Labor Series is published with the support of the Korea Press Promotion Foundation’s Press Promotion Fund. - Editors

Why I chose a job helping people with disabilities live independently

I’m a woman in her 40s with a severe disability related to brain lesions, and I work as a peer counselor for people with disabilities (PWD). Some of you might have never heard of this job before. A peer counselor for people with disabilities (PCPWD) helps PWD who want to live independently think about the physical and emotional support they will need, as well as also giving them practical help; in short, it’s a job in which a person with disabilities helps other people with disabilities.

The job first appeared in the U.S. in the 1970s when the independent living paradigm for people with disabilities was forming. It was an alternative job for people with severe disabilities who had trouble getting hired. It became known in South Korea in the early 2000s, though at that time it was less about supporting independent living than it was about publicizing and advocating for a new paradigm for PWD activism. Though it is not much better now, at that time, it was extremely difficult for PWD to establish autonomous lives by themselves.

I decided to try the job in the late 2000s, when I was working at an independent living center. When most PWD, including me, first start or prepare to start living independently, they quickly learn that there is a terrible lack of ways to request help or find relevant information.

That’s when I learned that the job of PCPWD existed, and I strongly empathized with the need for it. So, with a mind to try to solve PWD’s problems with a PWD-focused approach, I completed the two-year training process (elementary, intermediate, advanced and leader training plus a teacher qualification process) and started the job.

Training for peer counselors for people with disabilities.  © Source: Korea Employment Agency for Persons with Disabilities

Peer counseling for people with disabilities has a special characteristic that distinguishes it from regular counseling. It is that the counselor and the client both grow together by communicating with a fellow PWD to share with each other the life skills, tricks, and information that they need.  So the counselor and client are able to form a horizontal—in other words, equal—relationship instead of a vertical one. Also, since a sense of solidarity that allows for greater empathy and trust naturally forms between the counselor and client, it is more likely that the counseling will lead to good results.

You think all we do is listen and sympathize?

While doing this work, however, I’ve often been asked, “Isn’t counseling just about listening and showing sympathy no matter what?” If peer counseling for PWD stopped at that level, then you wouldn’t be able to call it proper counseling. Each case is different, but PCPWD sometimes have to actively intervene in the lives of their clients, suggest actions for them to take, and even lead them. There are many times when it would be it inappropriate for a PCPWD to simply empathize with their client as a fellow PWD. This also means that the question of where the line is, of how much to merely sympathize with them and how much to intervene, is always a big concern and something I have to keep in mind.

There are many such points of concern, but when I see how, through counseling, the client gets information that they weren’t able to find before, recovers their self-esteem, and begins to adjust to independent living, I find my work enormously satisfying.

As a counselor, you meet clients facing a wide variety of situations. Not long after I started the job, one of my clients was a woman with a severe disability related to brain lesions, just like me. She had lived her life completely at home for nearly 30 years. When her parents died suddenly, she was sent to live in a facility with no time to prepare herself emotionally. She was unable to adjust to that life and so had decided to try living independently.

She had no experience of life in society, and so in order to enable her to stand on her own, we met nearly every other day for three months. I helped her obtain government benefits so that she would be guaranteed minimum living expenses, solved the problem of housing by registering her for public rental housing, taught her how to use everyday amenities, and so on.  Thanks to these efforts, in just a little over half a year, she became a full-fledged member of society. And I felt a sense of relief that I had done so well for a newbie counselor, as well as a sense of reward, and gained confidence that I would be able to do even better in the future.

A picture drawn by the author when she was taking the PCPWD training.
© Gong-jon

I also once had a client who seemed like she had no need of counseling. As a woman with severe disabilities, she had—unusually—married a man without disabilities, given birth to a son, and found a stable job. However, during her fifteen years of marriage, she had had to manage childrearing, housework, and paid work while in the body of a disabled person. Her husband made no considerations for her.

She finally began to suffer from a mental disorder on top of her physical ailments. To make matters worse, her husband divorced her because of it, and she lost her parental rights. She was even practically chased out of the job that she had worked hard to keep for 20-odd years. I fully shared her pain, anger, sadness and despair as a woman with disabilities who had formed a family, raised a child, and tried so hard to be recognized as a member of her community in a society where patriarchal thinking is still deeply-rooted.

Painful and sometimes dangerous peer counseling

My most difficult experience was when I had a client with extreme disabilities due to a rare disease. The difficulties she had endured in the process of getting her disability officially recognized coupled with the physical pain of her disease caused her to occasionally feel a powerful urge to end her life. During the two-or-three months that I peer counseled her, my mental health also got worse.  And then one day, she attempted suicide. Looking at her in the intensive care unit, I blamed myself for my inability to give her strength, and for a while I suffered great emotional pain. In the end, I couldn’t help her become independent, and I had no choice but to refer her to a hospital and other specialist institutions.

The formation of rapport between the client and the counselor is the most important issue. It sometimes takes months to build. As some of my clients have been excluded and discriminated against because of their disability, it is not easy to get them to open their hearts. Because of that, my experience of having to give up on the client with the rare disease was very painful.

“Women with disabilities’ place in society
and sharing experiences” Notes taken by
the author during PCPWD training.
© Gong-jon

I also once counseled a woman with disabilities in her late 30s who lived with her family but wanted to be move out and be free of their clutches. She had repeatedly suffered sexual assault at the hands of one member of the family and had even been impregnated by him, but the other members of the family blamed her for this and were pressuring her to terminate the pregnancy and keep silent. They were even trying to forcibly institutionalize her. Together, she and I found a way to terminate the pregnancy, found her a place to live independently, and convinced her parents to provide financial support to her for a while.

In the process, however, I was threatened by her family and others and made to fear for my safety, until I felt like I couldn’t leave the house freely. When I think about that time, I still feel scared and uncertain about doing this kind of work. But it gives me strength to see how that client overcame that difficult situation, became independent, and is now living a relatively stable life.

This job often makes me wonder why our society is so indifferent and even cruel to the vulnerable. The double discrimination and exclusion for being not only a PWD but a woman, the financial difficulties this causes, and so on. The social foothold provided to women with disabilities so that they can stand on their own as members of society is still much too inadequate. But women with disabilities have to survive and get by somehow, and watching them meet helpers like me and, as they engage in communication, receive empathy, and feel that someone is supporting them, be comforted and build up their self-confidence is what makes it possible for me to continue doing this work.

No acknowledgement of the expertise required for my work

Most PCPWD are employed by a Center for Independent Living of Persons with Disabilities. Unfortunately, though, their position there is unclear, so they often get tasked with trivial work and even odd jobs at the centers. This despite the fact that, when you consider the nature of our work, we should be putting our energies toward continuous study and building up practical experience.

This happens because the work that PCPWD do doesn’t receive the recognition it deserves. I think that there are several reasons for this: a system in which people can work as peer counselors after completing only the short beginning-level program; the social atmosphere that underestimates our work as just PWD complaining to each other about the unfair situations and unjust discrimination we receive; and the tendency for Centers for Independent Living of Persons with Disabilities to decide they will create jobs for PWD and then indiscriminately produce large groups of counselors. 

For a variety of reasons, I’m now working as a freelance PCPWD. But when you are your own employer, there’s no one to protect you when you run into a dangerous situation while working. And actually, it’s hard to even get paid, because my clients, as PWD, have no or very little money. I wish that PCPWD went through a slightly more systematic and in-depth training program, and that we didn’t have to rely on Centers for Independent Living of Persons with Disabilities but could receive recognition for our expertise and be guaranteed payment as independent workers.

“Are you considering living independently?” Part of an announcement about a project to train PCPWD and dispatch them around the Seoul area. © Source: Korean Federation of Centers for Independent Living of Persons with Disabilities

Work that our society absolutely needs

I’ve been doing peer counseling more or less on my own for close to 10 years. Every few years, depending on how heavy their workload is, most counselors will meet with a senior counselor to receive counseling on their own mental state or counseling qualifications, to get advice and comfort and heal themselves. But I’m not part of this kind of system, so instead of expressing or receiving treatment for the trauma I’ve suffered as a counselor, I have to deal with it all alone.

So if you’re considering doing this work, there’s something I want to say to you. You can’t approach it as simple comradeship with a peer who also has a disability. Sometimes you’ll have to set your own feelings or opinions aside, and sometimes you’ll have to intervene in your client’s life to the point of it feeling like too much. Sometimes you’ll definitely feel tired and regret taking this job. And honestly, I don’t think there’s a special way to successfully make it through this process. (I haven’t found one yet.) You just keep going.

And, as much as possible, you have to study ceaselessly. When you do peer counseling for people with disabilities, you learn that you need truly unimaginable amounts of knowledge and information—about law, violence, discrimination, human rights, family, love, work, current events, religion, administration, disability studies, medicine, education, childrearing, and so on. Of course, you can just seek this out piece by piece as the client needs it, but there’s a big difference between counseling provided by someone who has a certain amount of basic knowledge and someone who doesn’t. I hope you keep that in mind. 

Through this article, I wanted to communicate the need for my job as well as the difficulties and the rewards that I’ve experienced while working more than 10 years as a PCPWD who herself is a woman with severe disabilities, assisting people who are excluded from society and discriminated against. I also wanted to raise awareness of work that PWD—and especially people with severe disabilities—who have clearly made a place for themselves in our society are doing. The work of a PCPWD is valuable and absolutely necessary. In the future, I plan to continue doing everything I can to solve the problems of people with disabilities in a way that centers us.

*Original article: http://ildaro.com/8591