When, God, When?

My heart is broken. Again. Once again I have heard the pain of a person with autism. Pain caused by the Church. A person who wants and needs a church home but cannot find one.

A person who just wishes someone would walk alongside and try to understand.

A person who has a deep desire to serve others and yet finds only the expectation of being served.

No understanding that everyone brings a needed gift to the Church, the Body of Christ.

No willingness to receive that gift but instead only concern and fear that this new person will be just another drain on time, energy, resources.

No acceptance or willingness to include.

Just another door shut in a face.

Just another closed heart, connected to a closed mind.

“Inasmuch as you have done it to the least of these, you have done it to me.”

Can you imagine? Jesus is knocking on a door and the response is “Sorry. Not interested.” The door stays closed.

Can you imagine? That what is being delivered is a part of Christ’s Body and the answer is “Sorry. Not interested.” The door stays closed.

The Body stays incomplete. And the world stays the same because the Church is not able (disabled!) to serve, to resurrect, to save, to transform?

Because the door stays closed to someone with great gifts. Because all the Church sees is the negative. A negative which may not even be real.

Fear turns us toward the negative.
Christ came to shine light on the positive, and yet we still don’t understand.

The Church needs everyone. Everyone, EVERYONE! When will we learn to open the door and let EVERYONE in?

When will my heart be healed, never to be broken again?

When will the Body of Christ be complete?
When will we be ready for the transformation of the world to begin?

My prayers arise even as my tears fall.

 

Reality Not Satan

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.

Human Devaluation

Like many people, I am deeply disturbed by recent events. Time after time police officers shoot at or get into confrontations with unarmed black men and grand juries fail to indict them. The response from many is “Black Lives Matter.” And I am as angry as many others that our justice system is failing time after time to produce what its title implies. I do not blame or impugn anyone who is protesting, no matter what form that protest is taking, although I believe that nonviolence will go farther to achieve the goal of correcting what is wrong with our system.

But there is a broader story here, one that indicates that there is even more happening than police brutality and racism and corrupt prosecutors.

Human devaluation. Some people are worth more than others.

The news media report far too often about children with autism being murdered by their own parents, of people tying them up and putting them in closets or basements, sometimes not feeding them or allowing them outside. Sometimes teachers and assistants have placed these children in cages. And there have been incidents where police officers have reacted inappropriately due to inadequate training when people with disabilities are involved—not prepared for someone who is deaf or has Down Syndrome or autism or mental illness. Some of these people have died at the hands of the police. Public sympathy is often not on the side of the victims.

Human devaluation. Some people are worth more than others.

Even the increase in news stories about hit-and-run accidents adds to this. People in cars are hitting pedestrians and bicyclists and not stopping to help or call the paramedics. Sometimes the drivers continue on with the victim embedded in the windshield or desperately holding on to the hood. Crosswalks and bike lanes are no protection.

Human devaluation. Some people are worth more than others.

Racism. Ableism. And what’s the third one? Transportism? People who are driving are worth more than people who walk or bike? I am not sure. But it’s clear that some people are not worth stopping to help.:

Some people are not worth treating with dignity and respect. Some people are not worth working for justice for or spending more time to arrest them uninjured than to just shoot them.

I am just thinking—–

And I am greatly disturbed, actually more and more disturbed.

Because if some people are not worth as much as others, where are we going with this?

Where will it stop? What classification will be safe?

Not poor people. Not black, brown or any other people of color. Not people with any type of disability. Not women. Not people with sexual orientations other than cis-gender. Not unemployed people. Not sick people. Not elderly.

Not anyone.

God weeps.  

37% Is Not Enough. 2% Is Not Enough…. Reflection on the WCC Busan Assembly #2

Women being underrepresented in the leadership of the contemporary Church is not exactly new. However, in my lifetime it does seem that women having leadership in the church has become more common. True, as any church pastor can tell you, women have always held power in the church for women, particularly older women, seem to do most of the organizing and grunt work that enables church fellowship–this is a type of power. But when I think of church leadership, I am thinking directly about the leadership of theological reflection, church messaging, and setting the priorities of church witness and social justice engagement and in these areas it has always been more of a struggle for women to be granted leadership roles.

One of the things that I learned during the World Council of Churches (WCC) General Assembly in Busan was that the contemporary global Christian church still struggles greatly to include the leadership of women, particularly theologically trained women. The work of the WCC is guided for the seven to eight years between assemblies by the Central Committee, which is comprised of delegates to the General Assembly. While the WCC strives for a 50%-50% quota of women and men on the Central Committee this has not been achieved. Why? Because, despite the aims of quotas, the Central Committee make up must reflect the make-up of delegates at the most recent General Assembly. Delegates to the General Assembly are nominated and sent as delegates by the member churches of the WCC. Women made up only 37% of the total delegates at the Busan Assembly, this means that only 37% of the Central Committee governing the WCC for the next seven years could be women. While the nominating committee did present a slate to be elected to the WCC Central Committee that was 37% women, the majority of those women seemed to be youths. While developing the leadership skills of young women is vitally important, it seems to me that counting youth in the overall all gender balance is one way to dismiss the theological leadership of women in the global church.

How can women become more represented in the global leadership of the churches? It is up to individual member churches/denominations of the WCC (there are 345) to design their own delegation to the WCC, the diversity of delegates will be reflected in the leadership elected to the central committee. Lay persons, youth, indigenous people, and persons with disability are also underrepresented in the church delegations to General Assembly, and thus on the Central Committee engaging in global church leadership. This means that the churches need to be more inclusive not only of women, but of lay persons, youths, indigenous persons, and persons with disability when selecting their delegations to the assemblies. The WCC asks churches to send delegations that reflect the diversity quotas of the WCC, but the quota seem to be just a suggestion.–I have to say that the delegation to the Busan Assembly from the United Church of Christ, in the USA, of which I was a member, did meet the diversity goals of the WCC. The UCC sent one ordained man, a lay member/female youth, and two ordained women one of who is also a woman with disability to Busan as delegates impacting the percentages which leadership coming out of the Assembly had to reflect.

The Assembly in Busan is now complete. The Central Committee which has to be carefully, and very politically, balanced as to church family, denomination, region, gender, ordained/lay, youth, indigenous, and persons with disability has been elected to serve until the next General Assembly. The numbers are not as balanced as desired, but General Assembly Delegates we were told that the slate was as balanced as possible. There was an effort to create the most balance, while still reflecting the demographics of the delegation of the assembly. I have to recognize that one of the Orthodox Bishops gave up his spot on the Central Committee so as to include a female youth representative; I wish others on the slate had followed suit to allow for more balance. The Church itself is a work in progress, still striving to show the world that “there is no longer Jew or Greek, no longer slave or free, there is no longer male or female; for all of you are one on Christ” (Galatians 3:28). So let’s be honest, in creating a committee to guide the ecumenical body of the global church…38% female representation in the leadership of the church is not enough; less than 5% indigenous representation in church leadership is not enough; 2% persons with disability representatives in church leadership is not enough! We have work to do, yet, to meet even the New Testament’s expectation of the church!

T-6 Days

Hello Friends!

Well its hard to believe that in less than a week I will be flying off to the General Assembly of the World Council of Churches in Busan, South Korea. The theme of this Assembly is Justice and Peace. I still have things to do before I go. I am preaching while I am there. I will also be serving as a delegate to the General Assembly from the United Church of Christ and of the Ecumenical Disability Advocacy Network! Please keep me and all the delegates in your prayers as we prepare for this Assembly, as we travel, and as we deliberate and engage in intra-faith dialogue. (And I hoping to make friends with some Eastern Orthodox priests!)

Thanks, Rev. Kelli

Disability and Diversity-Access Sunday 2013

On Access Sunday this year I was invited to speak to a local congregation about disability and diversity. Below is the talk I prepared, I did not follow it completely in speaking but it is my thoughts on the matter. I am available to speak with congregations about accessibility and disability ministries.

I am Rev. Kelli Parrish Lucas and I want to thank you for asking me to speak with you this evening. I was asked to speak with you this evening about the issues of disability and diversity—I am especially happy to have this talk with you this evening as today is what the UCC calendar calls Access Sunday, which is a day to celebrate accessibility in local churches; it is also the beginning of disability awareness week which concludes a week from today with Mental Health Sunday . So by further way of introduction let me introduce myself as a person with disabilities I was born with disabilities so I grew up with all the social stigma of disability but as I grew I was also well trained to pass as a person without disability; I have also acquired disabilities as adult and been a caregiver for persons with disability and mental health issues. So I come to speak with you about the diversity of disability as a person with disabilities. As I believe you were told in preparation for this evening, I also serve on the Board of Directors for the United Church of Christ Disability Ministries, for who I am the Secretary; and I am engaged in the ecumenical work of disability advocacy through EDAN a program of the World Council of Churches.

In many ways I am still musing about how to speak to you about the diversity of disabilities. (Because of our limited time I am going have to be rather general so please write down your questions to ask later.) Disabilities and all that is included as a part of that is a very broad spectrum, but that does not mean it is relative and we can say we are all somehow “disabled”. I say that up front because I think that as we look at what disability is there is the temptation to make it into something that includes all people, and it simply is not. Disability is a social location experienced by living in the world in an individually unique way, and yet that experience of being  uniquely different from everyone else is an experience that is shared by roughly 1 in 5 persons world-wide or 20% of persons. I also want to say a word about mental health. Mental Health issues affect 1 in 4 families, or 25% of American families. While disability does not guarantee that a person has a mental illness, often times the social stigmas, effects of bullying and/social oppression/discrimination that people with disabilities commonly experience lead to the development of mental health issues—btw I have read some statistics that suggest that bullying of youth with disability is more common then the bullying of any other youth, including GLBT youth. Similarly although having mental health issues does not necessarily mean that a person with mental health issues has another form of disability, many mental health issues have physical effects and may lead to temporary physical disability as part of the mental illness. I am going to talk about later about the specific work that UCCDM and the UCCMHN are doing together. But for now, I just want to underscore for you what these statistics mean—it means that for every 100 people in your church, 20 people likely have some type of disability and 25 likely have or are in a family with a person with mental health issues—and there is likely some over lap of these persons.

If we had more time I would ask you at this time to tell me what a disability is and I would write that all out for us to see, we don’t have time for that, so pull what it is you think a disability is up in your mind. Have you got it? Good, but we won’t have time to share that right now, but hold it for your small group discussions. There are two definitions of disability that I find to be very very useful.

1. “[a] firm definition of ‘disability’ underlies the authority of the ADA, which defines ‘individual with a disability’ rather broadly. A person may be considered disabled if he or she has (a) has a physical or mental condition that substantially limits one or more of the major life functions, (b) has a record of such impairment, or (c) is perceived as having such an impairment. Even if the impairment is no longer present, the individual may still be considered disabled. [Arthur Shapiro, Every Body Belongs: Changing Negative Attitudes Towards Classmates with Disabilities, (New York: RoutledgeFalmer, 1999) 263.]

 and, people with disabilities have developed the following definition of disability, which is used in the ecumenical movement

2. “Impairment: Lacking all or part of a limb, or having a defective limb, organ or mechanism of the body.

Disability: The disadvantage or restriction of activity caused by contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities.” [Arne Fritzon and Samuel Kabue, Interpreting Disability: A Church of All and for All, (Geneva: WCC Publications, 2004), ix-x.]

We are still going to talk about what disability is for a moment but I want to start moving into disability  and the UCC. The UCC has been involved in addressing the issue of disability through an active disability ministry for at least the last thirty years. The most recent General Synod resolution about disability, called “The Called to Wholeness in Christ Resolution”, was passed in 2005 and it calls on all expressions of the UCC to become accessible in the spirit of the ADA. This means our Synod has called for local congregations to work for the full inclusion for all persons with disability–

This includes: Physical disabilities, Developmental disabilities, Mental/Emotional disabilities (including mental illness, brain disorders, autism, depression, anxiety, ect.); Mobility disabilities (arthritis, back issues, use of canes/walkers/wheelchairs ect.); Auditory/hearing impairments; Vision impairments; Temporary disabilities; Hidden disabilities (things people don’t/won’t talk about); Disabilities brought on by accidents or age; and anything else missing from this list.

Guiding churches in doing the work of becoming accessible and inclusive of all persons with disability is part of the work done by UCCDM. The UCCDM has a designation we call A2A. Churches who want to be A2A are asked to work through a curriculum/resource packet to help the congregation gain a better understanding the breath of the diversity of disabilities, how to be welcoming and inclusive of people with disabilities, and how to be prepared to make appropriate accommodations when necessary. This resource packet is called “Any Body, Every Body, Christ’s Body” it is free and you can download it from the UCCDM website. The UCCDM Board acknowledged that while accessibility for churches often means making physical accommodations, the majority of work involved in becoming accessible is related to what we term becoming “socially accessible” to people with disability and this is a process of learning and integrating disability etiquette.

Many people do not realize or forget that up through the 1970’s people with disabilities were prohibited from public spaces under what were called “ugly laws”,  confined to institutions (sometimes w/o consent), denied the right to marry due to eugenics laws, and that people with disabilities were not guaranteed access to public education until 1973. As you can guess there is still much work to do in society before we reach the full inclusion of people with disabilities and persons with mental health issues—but there is actually more work for us to do in our churches. When the ADA came into existence it was supported by the churches, but most people don’t realize that the clergy supporting the passage of the ADA also worked to exempt churches from the implications of the law; the result is that in addition to churches being among the most racially divided places on Sunday mornings, churches have become the most inaccessible places in our communities.

The UCC and UCCDM have been heavily involved in area of civil rights for people with disabilities; just as all groups of people who go through a civil rights process seem to reclaim. language and even rename themselves as a group, the disability community has done this as well. The UCCDM through the A2A resources have sought to establish the use of what the disability community calls “people first language”, and that handout is on the table for you. People first language is language that names the person, or theologically the humanity, of the person about whom one is talking or writing before defining that person by their disability, as previous terms did. People first language is the standard within the UCC and within the disability community—I will tell you that some disability scholars with disability are using other terms and the language within the disability community is in flux, but people first language will not offend, so its safe as a rule to use in all settings.

So I just want to close with a very brief description of the larger work of the UCCDM. The UCCDM has fostered a renewal of the UCC Mental Health Network, which this summer changed their name to the Mental Health Network. Some of the other projects that the UCCDM is actively engaged in are….[this has been omitted from this post, please see uccdm.org for more information about UCCDM activities]

So that is just a little about the diversity of the disability community, disability history, civil rights, and how disability is part of the life the UCC. I am going to stop and open it up to questions. 

NONE OF YOUR BUSINESS!

Note this maybe a part one of more.

Occasionally I am reminded that people don’t understand me…reminded that I don’t fit the neat categorical boxes…and occasionally I am reminded how uncomfortable that can be for me and other people.

I had the unfortunate experience of this happening to me at the recent UCC Synod in Long Beach, California. I was there as a delegate for the Justice and Witness Ministry of the denomination, the board that I served as the disability ministry liaison to until the denominational structure changed at the end of Synod. As a delegate I was on the floor for discussions, and there were a lot of us, so I tried to minimize my speaking so all who needed to speak may be heard. If you know me, or have read a few of these blogs, you may know that means I found myself at the microphone at least two or three times (in five days to be fair to myself). Once upon returning to my seat I had the following conversation with a man who was also in the Justice and Witness delegation with me, thus he knew me from previous board meetings and who I represented. My inner thoughts, no matter how badly I wanted to say them, will be in italics:

Man: You don’t (snidely) really have a disability, but I think its nice you speak up for people who do.

Me: Excuse me, wh-at? What did you just say? I’m not disabled, or not disabled-enough? Act-u-ally I do have a disability. (I spoke slowly and clearly so he could hear me in the convention hall with 2000 other people, and at the table full of our delegation, and clearly he lacked understanding the type for which I lack diagnostic powers.)

Man: (He leaned in close to me, and if he had been any closer I would have felt his beard hairs brush my face.) No you don’t. (Nodding his head closer to me. This man was in my face!) Well, then what is your disability?

Me:  Are you kidding me? I can’t believe I am going to answer that question. But I have to because if I don’t he either thinks I am a fake or a liar, my only choice is to revel my personal medical history. So I gave him the bullet points of my history. I felt like I was unveiling a secret window into my personal and family history–not because I was ashamed but because it was personal and vulnerable and I was surrounded by people in a loud place and practically commanded, not asked, to reveal myself, or else be deemed a fraud. Only in retrospect as I consider the gender, age, and racial power dynamics of this interaction do the connotations of white, male, aged, and able bodied privilege reveal themselves. In retrospect this man becomes more and more a creepy old man.

I quickly looked away and avoided eye contact with him. The business of the evening moved on. I glared.  He moved back to his seat at the other end of the table. I watched him and his presence made me uncomfortable the whole rest of the evening. I knew I was upset, I did not want this unjust and unequal type of exchange to color my experience of Synod. I knew he was only one person. But, still, this was church, ALL SHOULD BE WELCOME, INCLUDED, and AFFIRMED. But I felt uncomfortable and unsafe. I seethed. I had trouble focusing on the worship but somehow pulled myself together. I knew if given the chance I needed to ‘lean-into’ this conflict.

At the end of worship and the evening I felt heavy and weighted, and only partly because I was exhausted from the day. Most people left the convention hall quickly. I soon found that myself and this man were among the last at our table. I glared at him. He stepped forward to give me a hug, having been all pumped up by the preacher.

Me: No. I am sorry. I want to be in fellowship and Communion with you, but I am still thinking about our earlier conversation and I am just really hurt.

Man: I understand. (He dropped his arms and started to drop his head.)

Me: I don’t fall for the dejected liberal do-gooder act very well. UMM. No I don’t think you do. To insinuate that I don’t have a disability, or am not disabled enough, when you know that is obviously how I self-identify is not ok. It is a form of bullying. I have to put up with that type of bullying in the world and in the workplace but I’ll be dammed if I am going to put up with it in church! And you did that while wearing your anti-bully scarf so no I don’t think you understand at all!

He but his hands to together as if in respect and walked away out of the hall, as he left I saw him take the anti-bullying scarf off and place it in his bag, that made me feel slightly better. I was very upset and had to find one of my disability peeps to talk to about this.

The next day, Synod debated the anti-bullying resolution that was before us. I spoke from experience about being bullied as a person with disability, and reminded the church, the Synod, that it happens even “here” within the “bar” that separates delegates from the rest of the church; and I asked they vote not to feel good but to change themselves.(The UCC News quoted me.)

One of the staff members saw me the following day and asked about my comment related to being bullied at Synod. Upon my arrival to Synod I had been talking with this staff member, who happens to be African-American, when another (white) delegate came up and asked her if she had “gotten a tan” on vacation; by the time I was mid-way through my double take processing the comment about a “tan” the staff member was so elegantly agreeing that she had gotten a “tan” that I almost believed it was casual conversation. It wasn’t and the staff member brought it up when she asked about my bullying comment. We alluded to having some of the same feelings related to our separate experiences.

So church, think before you speak or ask… Think about the privilege you carry that others may not have. Consider the other, the Thou, the beloved child of God before you speak. Just think before you open your mouth. Could what you are about to say be offensive? Can your curiosity be framed another way? Because, yes, I do have a disability; and yes, maybe she did get a tan. But then maybe, just maybe. ITS NONE OF YOUR DAMMED BUSINESS!