Tag Archives: disability

It’s Different for PWD.

by Rev. Kelli

Recently, I attended a World Council of Churches meeting. It was the Theological Reference/Harvesting Group for the Pilgrimage of Justice and Peace in North America. It was an very important meeting for the future of including people with disabilities in the scope of work of the churches. But this post is not about that.

At this meeting, we were shown a preview of a video about the Pilgrimage that will be played at the General Assembly next year. While we were watching it, I gasped and started to sob. I had seen a image of Micheline. Micheline died last year. She was a theological professor, disability justice and women’s justice activist, and a member of the WCC Central Committee. Many of the people at this particular meeting knew her. I was the only one who gasped at seeing her image as if she was among us.

All people experience grief and loss. The deaths of loved ones and coworkers is a normal part of life. Some of the people who saw this video for the first time with me were happy to see the images of Micheline; others pointed out that other people who had been part of the pilgrimage had died as well and it did not change that they had been a part of the journey. That is all true. It is well and good and people were perhaps trying to comfort me.

Here is the thing. Losing a colleague is not the same for people with disabilities (PWD) as it is for other people. Certainly we all lose colleagues at some point. People who have grown up with disabilities, however, have often lost friends and colleagues over a longer period and more frequently than people without disabilities. As part of the disability community we often know more people with health issues that worsen with time, we know people who because of their disability have a shorter life expectancy, and/or we know people who die because disability bias is such they they can not get proper medical care. As a former bereavement coordinator, I can tell you that many PWD experience the loss of colleagues with disabilities as compounded, even complex, grief because it is often entwined with ableist oppression.

While many of us at this particular meeting knew Micheline. It was only the PWD who who knew her who experienced the use of her animated likeness in a video as a grief trigger. While others could see this and be reminded of the good memories, to me it was a reminder of yet another co-worker for justice who was no longer able to work with us. That list grows each year. To see her brought back to life in a way via, video as if nothing had happened bothered me. Because something had happened. She was dead. It reminded me how my experience as a person with disabilities is different than that of other people, even when it comes to grief. It is a nuanced way in which PWD are not understood by people outside the disability community.

Reality Not Satan

by Rev. Kelli

Then he began to teach them that the Son of Man must undergo great suffering, and be rejected by the elders, the chief priests, and the scribes, and be killed, and after three days rise again. He said all this quite openly. And Peter took him aside and began to rebuke him. But turning and looking at his disciples, he rebuked Peter and said, ‘Get behind me, Satan! For you are setting your mind not on divine things but on human things.’

He called the crowd with his disciples, and said to them, ‘If any want to become my followers, let them deny themselves and take up their cross and follow me. For those who want to save their life will lose it, and those who lose their life for my sake, and for the sake of the gospel,* will save it. For what will it profit them to gain the whole world and forfeit their life? Indeed, what can they give in return for their life? Those who are ashamed of me and of my words* in this adulterous and sinful generation, of them the Son of Man will also be ashamed when he comes in the glory of his Father with the holy angels.’~Mark 8:31-38 NRSV

Many times in Christian tradition we hear Jesus referred to as the “Great Physician”. In this week’s lectionary I think we see Jesus the Great Physician, in rare and honest form. Jesus is giving his disciples a very clear prognosis. Peter, like so many of us, responds with denial –the first stage of grieving. Peter is so like us.

I remember sometime in late 2002, I sat in a orthopedist’s office. He spoke to me about the MRI of my spine. He used words I did not, yet, know.  What I most remember is “by age 40 you’ll be using a wheelchair or in need of spinal surgery.” NOOOOO! My brain, like Peter’s could not process it. I could not conceive of what he said. My mind shot out firecrackers of um so I worked my way through years of painful, confidence shattering physical and speech therapy to cope with Cerebral palsy, and now you are telling me that I am going to need to use a wheelchair anyways? Then what has been the point of all the work everyone told me was necessary and good? What then has been the point of my life if not to exceed expectations? If I can no longer do that who am I?  His words could not possibly fit into what I knew of life.

Peter rebuked Jesus not out of stupidity, although the writer of Mark sometimes portrays the disciples that way. Peter’s reaction to the news that Jesus would die was not really inspired by Satan, but by the very human experience of not being able to connect new information to what was expected based on a very real and human understanding of the world. Peter could no more conceive of the Messiah dying on a cross, then some people can conceive of a woman who used to have a speech impediment preaching. Peter is not very different from the families I meet who can not believe that their loved one on hospice is actually dying.

We live in a society that teaches us that physical change and decline is unacceptable, that it needs to stay hidden or be “put away” somewhere. But that is not how real life is. We are born, we age, we decline, and we die. Jesus is stating a very matter-of-fact truth about human life. Still like Peter we resist it. We resist change. We don’t want to believe that the real plan might be different from our plan. The influence of the Greek cynics is strong, we hear it from the men who die along side Jesus “Physician, heal thy self” / “Save yourself if you can”. That is what Peter expects–triumph against the world and the expectations of history.

Jesus, however, invites us forward into the very history we resist. Jesus calls us to the new. When my chronic pain started in 2002, I hated it. I wanted to go back the time when life itself was not a struggle. I took me a while to learn that was not going to be an option. Life became the unexpected. Somewhere somehow I realized that the pain might change my life but would not end it. I lost the competitive swimming, lost some ability to do the physically taxing book art that I loved, and lost some of the activeness I was known for. It seemed like I lost me. In time I realized that was all wrong. My acquired disabilities invited me out of the shadows. I could not hide my chronic pain as I had learned to compensate for and hide my cerebral palsy. A nun who had spent most of her career working with people with developmental disabilities, and was my supervisor, thought it was great fun to fold her arms over her chest and point out to me my very CP personality traits. Then there were the old ladies who sat behind me at church, who saw how much it hurt for me to stand or hold the hymnal in worship. They forced me to try a cane. I did not like any of it, but recognizing my real needs helped. It was when I could accept my acquired disabilities that I stopped denying my native disabilities. I learned to accept myself. It has made all the difference. To come out as who I am as a disabled woman has also allowed me to become an advocate, to make the world a more welcoming, accepting, inclusive world. That is not the work of Satan, it’s the work of accepting reality and following Jesus wherever he has us go.

United Church of Christ Disability Ministry Board—new member is also a WWSIC!

by Rev. Kelli

Today I got word that I have been invited (or is elected the word?) to join the Board of the United Church of Christ’s Disability Ministry! Something like this has been on my mind for a few years now so when I was approached and asked if I would be interested my response was “ABSOLUTELY!!” I’d been waiting for it. Now all that being said, I don’t have all the details on this new position, yet.

Nonetheless, I am excited to further the work of inclusion and access for people with disability within the UCC and to work with the UCC Mental Illness Network. I have been working with some of these folks on the Widening the Welcome 2, disability ministry conference planning team this year, so I know I will be working with some wonderful people! So excited!

Since presenting a workshop on Accessibility to All (A2A) at Southern California Nevada Conference of the UCC Annual Gathering two weeks ago, I have been thinking about how to differentiate and express the specific inclusion needs of people with disability as distinct from “Open and Affirming” (ONA).  I have been thinking this because I spoke with a pastor at AG who did not see the need to become A2A because the congregation was ONA. It is clear to me how these are not the same and how one does not equal the other. There may be similarities in dismantling the social stigmas faced by GLBTQI people and people with disabilities but they can not be approached in the same way–I mean you don’t have to create curb or pew cuts to open yourselves to GLBTQI folks into your church, and you may need to do that to welcome people with disabilities. Also often times GLBTQI come to church looking to be accepted as part of the “norm,” whereas this is neither always a possibility or desire of people with disabilities and mental illness so the move to inclusion and accessibility is more nuanced than mere welcome and affirmation–it may mean helping the congregation interact with someone whose mental illness or disability may manifest as in a socially awkward or even anti-social way. I see ONA as a step, but it’s not all the way to A2A. I look forward to pondering how to more clearly convey these distinctions to my wider church community, and learning from the other members of this board!

Did I mention I also started a second ministry position with hospice this week? Oy vey! I’ll be needing to update the bio soon! First a nap!