Rethinking How We Value “Productivity”

by Lateef McLeod

Work for me is something that I handle, but do not fully appreciate. There are many reasons why I say this. One reason is that I do not think my work is valued much in the wider social context. My written thoughts and experiences are sometimes so far away from the main stream that is often over looked. This reality makes me think of how much is my work really worth in today’s economy. Do I, and other people who use AAC to communicate, have the capability and the desire to be part of today’s workforce, which is being streamlined so employers are getting workers who are more productive but less costly? Is this the best option for us to aspire to?

The professional classes of people who use AAC are few and far between in today’s society. Besides a few notable exceptions like Dr. Bob Segelman, a sociologist, and Bob Williams, the Associate Commissioner for the Social Security Employment Program, most people with severe mobility and speech disabilities do not have the opportunity to pursue lucrative careers or even full time to part time work. My experience with the work force in light of this fact has been very fortunate in securing a blogging position at United Cerebral Palsy of the Golden Gate in Oakland, where I work part time. However, even with this steady income combined with my Master’s degree, I still only make roughly minimum wage a year. This means even with my education, the way this economy is set up, my production value is greatly decreased because of my disability.

In Sunny Taylor’s article, The Right Not to Work: Power and Disability, she points out that in today’s economy people with disabilities are worth more in the private industry in nursing home beds then out in the work force. Taylor argues that people with disabilities should have the right to determine the level of production they can contribute to society without being stigmatized for it. This philosophy directly challenges the mainstream view that a person gains status in their society from their occupation. Taylor is indirectly expressing that people with disabilities intrinsically have value in society whether they have a job or not. This revolutionary thought liberates people with disabilities from striving to validate themselves through the entrance of the regular workforce. It makes people with disabilities the masters of our own production who are able to define and determine exactly how we will contribute to our respective community.

To take control of your work productivity is a revolutionary idea for people with disabilities, and I think it is empowering for people like myself. Instead of conforming to the normative ideal of working a nine to five job until I eventually retire I am free to pursue more creative endeavors. My passion is to pursue a career as a poet and a novelist. This means that I have to frequent spoken word and other poetry events to get my name out there and to promote my recent published poetry book. As I develop as an artist I have to make sure that my other obligations do not distract me from my creative work. Time management really helps me in this endeavor and should be a focus for any person with disability who wants to be productive in reaching their goals.

I am not saying full employment is not a worthy goal for people with both a severe speech disability and mobility challenges. For those who want a traditional career, I encourage them to succeed in their goals. However, for those who would like to be creative with their productivity whether it is creative artwork or just being more engaged with their community, it is important work that should be valued at least with acknowledgment. For some people who communicate with AAC, just staying engaged with their surrounding community might be a full-time job in itself.

Editor’s Note: Tomorrow is Blogging Against Disablism Day (BADD), and many members of the community take the day to blog about issues like those we cover here at DRN. To learn more or to find out who is participating afterwards, follow the link.

Live Inexpensively or Die

by Clint Berger

Early news stories about George Hodgins’ murder stated the “views” of his mother about the services that were available to help George and people like him, or the alleged lack of them. That statement was later refuted. George Hodgins had been involved in at least one organization that provided him both the help he needed and social interaction in his community. His mother took this away from him, saying that she wanted to find something better for him, but she did not see this through. She instead decided to take his life and her own.

George was affiliated with the Morgan Autism Center in San Jose, California. He was there for schooling and to learn life skills. His mother pulled him out of this program, but did not actively pursue other opportunities for him as she said she would. A representative of the Center stated that they had services available for adults as well as for children. George would have been eligible for adult services at age 22. Instead of letting him continue working with the Morgan Autism Center, Elizabeth Hodgins had something else in mind. George would have learned to be more independent, and he could have made friends and become more active in his community. The opportunity for a full life was stolen from him, and then life itself was stolen as well.

Elizabeth Hodgins used a supposed lack of services for her son as “justification” for murder. To say that this is wrong is a gross understatement. Some of us legitimately do not have services available and we are still alive. Often, the “burden” of raising a disabled child is heavily financial. This is likely one of Elizabeth’s possible motives for George’s murder. We will never find out the true cause of his murder, but it is possible that the monetary costs of caring for George were a factor in her twisted thought process. We will never get the truth, nor will we know the truth of what happened to any of the others whose names were read at the vigils. Since the vigils, more of us have been murdered, and with each of these murders, we all wonder when our voices will be heard.

Money can be tight for families of people with disabilities, but it can be used to control and abuse us; this is a concept and a lifestyle that is very familiar to me. Every day of my life, I get constant reminders of how much it costs for everything from the electric bill to my student loans. I am not on any federal or state assistance, and I am unemployed. I have a caseworker assigned to me who is supposed to be providing services similar to those available to George, but my calls are not returned. My needs are not treated as needs, and I am told I live too far from public transportation to be able to use paratransit. I essentially have nothing available to me right now; and that is why it is so upsetting that someone would lie about their child’s potential to evoke sympathy for themselves. George was working with the Morgan Center, and there are no accounts that justify his mother’s assertion that he was not receiving proper support there.

George’s case brings so many questions for anyone with disabilities. The question at the top of this list is something to the effect of, “How long will they let me live before my life is taken?”, but this is not the only question we have. The next question we all ask ourselves is “how will I be independent?”. We all struggle to be as independent as possible, but many of the government and nonprofit agencies that are established to help people with disabilities are actually geared toward helping their families instead. They are supposed to be helping us, but even they overlook us. George needed help. He needed to remove himself from the family that was supposed to be helping him. Even the director of the Morgan Center, Jennifer Sullivan, expressed sympathy for George’s family on her blog for the center. Yes, there are other family members mourning George’s untimely death and his mother’s suicide, but they likely don’t see Elizabeth as a murderer either. There comes a time when the focus needs to change. Start supporting people with disabilities directly. The families need support, I cannot deny that, but the best support for the family is education. Teach parents how to care for their children without controlling them, especially as they reach adulthood.

Many of the services and donations to these families are not directly monetary, but money is the key, everything that is needed and provided has a price tag on it. Most parents of children and adults with disabilities seem to ask, at some point, “when will my son or daughter be independent?”.The answer is that your loved one will be independent when services are properly administered, when the money meant for them is actually in their hands, and when they are treated like human beings and not like burdens on their families and society. Until we have money in our own pockets, we will not be seen as “productive members of society” and our opinions about our own lives will continue to be ignored. When the money intended to help us is controlled by our parents and caregivers, it allows and encourages them to control, abuse, and even murder us. We have dreams of independence beyond removing the “burdens”, but we also have voices that need to be heard. George’s voice can no longer be heard, but mine can and will be, as will those of my colleagues. We are more than a line in a budget, we are human. Focusing on the families is another way to talk about us without us. I urge everyone out there who wants to help people with disabilities to focus on us, to let the help trickle down to our families. Help them by seeing our potential and helping us fulfill it.

If, after reading about George here and reading my own take on this aspect of our lives, you still question the idea that the focus is not on us, you need look no further than Youtube. The videos below are rather lengthy, but they do well to help me show  that we as people with disabilities are not the priority in our own lives, even when people and organizations say they are trying to help us. These two videos depict a PowerPoint slideshow that gives statistics relating to the social, economic, and emotional impacts children with disabilities have on their families, such as the costs of care and time spent to care for these children. The parents in attendance are then given the opportunity to respond and tell personal stories. Many of these stories involve the parents explaining how they cannot go out to dinner, or take a family trip to the zoo like a “normal” family. The emphasis is on being a normal family, not on allowing the disabled children to live full happy lives, as it should be. Emphasizing the impact on the families and showing sympathy for parents and caregivers is enabling these families in their effort to control every aspect of their children’s lives, including, in cases like that of George Hodgins, when these lives are to end. Something is blatantly missing from these videos; that is the input from the children who live with the disabilities. If you wish to help us, start by listening to us.