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.