Center for Excellence in Developmental Disabilities Education, Research and Service

By Cathy Jortner

Cathy Jortner is a parent of a 31-year-old man with Down Syndrome who is a permanent and valued altar server at 8:00 masses at Sacred Heart, a Roman Catholic Church, in East Berlin, CT. Cathy has advocated tirelessly for inclusive education and inclusive lives for Andy and others with disabilities.

My three older children had made their first communion and confirmation at our neighborhood catholic church without incident. However when my youngest son who has Down Syndrome and Autism became of age to make his First Communion I was told that he wouldn’t be able to because he couldn’t understand the concept of the Holy Trinity ( a concept I don’t quite get either). I turned down an opportunity for a private ceremony and bullied his way into the ceremony with everyone else. I may have lied to the priest about his and my capabilities.

Years went by and it was time for him to make his Confirmation. We faced the old objections to his presence with the rest of the class and again I turned down the opportunity to have a private ceremony and again I may have lied and schemed and forced the issue to get him into the class with his non-disabled peers . After his Confirmation I began “church shopping” for a place where the bible wasn’t interpreted as “send the little children unto me……all those with IQ’s over 70, everyone else stay home”. Finally I found Sacred Heart Roman Catholic Church in East Berlin. Father Ed Nadolny was the pastor and his reputation as an activist was well known. When Father Ed asked for alter servers and said, “age is not an issue, anyone at all who is interested please see me,” I thought we’ll see about that, so I invited Fr. Ed over to meet Andy as asked if he thought Andy could be an altar server. Fr. Ed said yes and the rest is history.

Andy is the altar server at the 8:00 mass on Sunday. Fr. Ed and Andy have a bond on the altar that’s joyous to watch. Fr. Ed let’s Andy know when he needs the water, etc., thru a series of subtle hand gestures or verbal prompts. The congregation has not only accepted Andy, they have embraced him. Recently Andy was hospitalized and when he finally made it back to church that first Sunday everyone made it a point to tell him how happy they were to see him and to give him a thumbs up. On any Sunday at 8 when the congregation watches Andy serving they may see him gesture and talk to someone whom no one else can see, or when his back is to the congregation they may see him adjust the white robe he is so proud of and everyone just smiles and shakes their head in amazement as Andy talks to God.

By Fatma Antar

Fatma Antar is a professor emeritus at Manchester Community College and visiting lecturer of Arabic at Trinity College. She is on the boards of the Hartford Seminary, Muslim Coalition of Connecticut, and the Islamic Association of Greater Hartford where she also serves as director of education. Fatma Antar closed the formal part of the session by providing highly informative responses to each of the four of the questions asked of other panelists from the perspective of a Muslim.

Starting as a Muslim, the first thing that we say is 'In the name of God, the most merciful, the most kind,' and God is also asking us to be that way – just – with others. There are many mosques in the state of CT and the one I belong to is in Berlin. There are about 200 families who worship there and we have people with disabilities.

There is no paid staff – everything is run by volunteers and through contributions by members. Relatively new to CT, services are limited and some of the services needed for people with disabilities are limited. Most religious education teachers are volunteers and are not professional teachers. During registration time, parents fill an application form and answer some questions about their child needs. Parents have the opportunity to let us know if their child is with special disability and we try to work with the parents to see how together we can help. Parents are encouraged to be with their child with special needs to make sure that the child, the parents and the teachers are more comfortable. But, everyone is welcome – It is a given. Of course there are people who would and do leave, unfortunately.

There is a mother who has two kids with disabilities. I called this mother on Mother’s Day to wish her happy mother’s day and ask about her because I did not see her for several weeks. She did have some issues with her two sons. She had already told others about it, but no one shared it with me even though I am the Director of Education! This mother said that the teacher is picking the best 5 kids to give them awards but there should be no competition in religion; her kids never got awards. She wants the teacher to recognize that her kids have a special gift and to be appreciated as such.

There is a huge need for education of teachers and parents about those issues.

There is also a large immigrant community which culturally may want to hide the fact that their kids have disabilities. Therefore, sometimes we are struggling at Sunday school in how to address their needs. With clearly seen disabilities, it is often easier to address their needs. With other disabilities, e.g., psychiatric conditions, it is harder to address such needs with limited resources.

There is no difference between the Muslim community and other faith communities in this regard. However, there is a consistent attack and demeaning of Muslims in this country. When a politician says something about Muslims for political gain, this hurts many families and their children. Our children are under a lot of pressure in their schools as Muslims and we have to keep this in mind. Children from different religious backgrounds, racial background and children with disability face bullying in their schools and now Muslims are the new 'hated minority.' Yet, there is good history of how African Americans, Jews, and others have 'made it' so there is great hope.

By Mary Lou Freitas

Mary Lou, or “Lu,” Freitas is a Christian, actively involved in the Covenant church, Sunday School as a teacher, Bible studies, youth groups, camp, etc. She is also parent of 6+ (2 of whom have disability labels), a foster parent, an educational surrogate, & someone who has worked with people with various disabilities or challenges for many years.

I would give my congregation an A, if not an A+! To me the two key words about inclusion in faith communities are respect and honesty. I have always felt welcomed with my two kids who have disabilities (I have 6 altogether)... but it's not overdone. I don't get the 'oh, you’re so wonderful for being a foster parent' but I am always answering questions which people ask when they really and genuinely want to understand. The new youth pastor came up and said, 'I have to be honest, I’ve never worked with someone with that type of disability. Help me out.' I'll even put up with political incorrectness if it comes out of respect and honest interest.

My daughter with a disability is going to camp at her church and in New Hampshire. I was told, “We’ll just put an extra junior counselor in her cabin.' It was no big deal! In Sunday School, teachers are able to modify work for her. For example, she can’t read but she has an excellent memory so she’d know which Bible verse they were covering verbally. They'd have her open her Bible and do it by memory instead of reading it. For someone else to think about how to do this instead of me bringing it up is huge!

About my son, people speak to him directly and when he doesn’t answer, one of the other kids at church will answer for him. My previous church wasn’t physically accessible with steep old stairs and, although people were wonderful about offering to help carry my son downstairs, it wasn’t until a woman had a stroke that there was an outpouring of money to make the church hall accessible. People at my current church love having my kids there. I met another kid at the church a few years ago who is maybe on the autism spectrum and asked if he attended any of the youth groups here. He said no so now I know (after hearing Dr. Carter's keynote) that I can connect with the parents and give a personal invitation as another parent who is welcome and whose kids are welcome there. Oh, and we also have an interpreter who signs!

By Heather Northrop

Heather Northrop is a parent, sibling AND an individual with a disability. She is a Christian who has been actively involved in her faith community as well as numerous other activities to facilitate inclusion of people with disabilities. She serves on the Citizens Advisory Council for the Connecticut’s UCEDD. Heather responded to the second question,"What types of supports are most helpful in supporting meaningful inclusion in a faith community?" Before beginning, Heather introduced conference participants to Zephyr, her service dog, who came through “Canine Companions for Independence.”

I was thinking of talking about support in terms of three 'C's.' One support that is absolutely necessary is COMMUNICATION. Zephyr was an example because, while I was in Long Island for the two weeks of training to work with him, there were two weeks of Bulletin notices about service dogs and how to treat them, including, no, other pets are not welcome!!!! This paved the way so that the first time we showed up, there was not a free-for-all! My congregation has 4 services and, as a scripture reader, I attend all so everyone knows Zephyr's part of my life. Staff in our church's Ministry to Children and Families has invited us to speak to the children about Zephyr so the kids are learning about him and what he does in my life. I often hear kids saying “That’s a working dog, don’t pet him” to their parents.

My church has sign language interpretation but I've also made it clear to them that, if you don’t communicate that interpreters are here, no one will come. Therefore, my church’s website contains clear signage about what is available.

The second support is CREATIVITY. You don’t just throw money at people with disabilities. Volunteers who are adults provide 1:1 support for anyone who needs the Buddy System in religious ed. I have served in this capacity with a young man with Down syndrome. Avoiding latex in activities has been something that requires creative changing of traditional activities. Answers should always be “yes” with "how to do this" as the focus of the problem-solving.

The last “C” is COMPASSION in how to support people affected by disabilities. This includes what folks can expect from their pastors as well as acceptance and understanding that we were all created by God and, as such, important in creation. This compassion works through other forms of support – i.e., it is not my illness or my disability but that I have things to offer although some flexibility may be required to accommodate how my gifts to my faith community can be met. If I had cancer, it seems is would be easier because there are concrete expectations. When you don’t even have a diagnosis as I don't, there has to be acceptance of my good v. my bad days. This often requires ongoing compassion with a specific commitment to recognizing me & my needs. A "blanket" program doesn't always fit every need.

The fifth panel member on 5/16/12 was Rev. Josh Pawelek who has served as minister of the Unitarian Universalist Society: East in Manchester since the summer of 2003. He lives in Glastonbury with his wife and two elementary age sons. Rev. Pawelek spoke passionately about many aspect of inclusion in his faith community, including some that extend beyond the physical building itself and truly celebrate the gifts of every member. Additionally, he has opened the building to community events such as an art show of works done by a society member with a disability.