Stories from Young Adults with Disabilities about Spirituality and Their Transition to Independence (OR UCEDD)
May 22, 2015
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In May 2014, the Interfaith Disabilities Network of Oregon (IDNO) sponsored its second annual conference on spirituality and disability, Beyond the Ramp: Treat Me as a Member, Not a Mission. Held in a Portland-based university setting, approximately 60 people including members of the clergy, lay leaders, people with disabilities and their families attended this event.
IDNO is an Oregon-based community group of individuals with and without disabilities with a mission to activate the resources of faith communities to welcome, celebrate, and include the contributions of every person with a disability in their chosen faith or congregation.
The conference explored how faith communities can be more inclusive and featured keynote speaker William Gaventa, MDiv, who has spoken to audiences around the world on issues concerning theology and disabilities. The conference brought inclusion experts together with the intent to begin a dialogue to find ways to help break down some of the barriers facing people who experience disabilities.
A panel of four leaders who experience a variety of disabilities volunteered to participate.These individuals were selected from the Oregon Health & Science University (OHSU) University Center for Excellence in Developmental Disabilities (UCEDD) adolescent transition and self-advocacy project, Emerging Leaders Northwest (ELNW). The panel discussed the role that faith played in their transition to independence in a session entitled, Developing Independence, Self-Determination, and Spirituality during Adolescent Transition.
The four panelists included: Jade, a 19-year-old woman with cerebral palsy; Max, a 26-year-old man with autism and visual impairment; Eleanor, a 31-year-old woman with four-Limb Phocomelia; and Peter, a 30-year-old man with Proteus syndrome.
To prepare for the session, Jade volunteered to develop draft question for the panel discussion. Panelists met to review, discuss and make adjustments to the question list. Once the questions were finalized, panelists wrote out their answers to each of the questions prior to the conference in order to be completely prepared.
At the conference, Emerging Leaders used a facilitated panel discussion format to share about of the role that spirituality and faith plays in their transition to adulthood. The conference evaluation revealed that 100 % of respondents were satisfied with the information provided during the panel discussion. One respondent remarked, "...I am much more informed about how young people with disabilities rely on faith to sustain them." These panelists' brought an important message of lived experience to clergy, lay leaders, disability service providers and individuals with disabilities and their families. Panelist' responses are outlined in the following pages:
How did/does your disability contribute to your choosing the spiritual path you have?
Max:
"I chose the church I attend because I guess I don't get judged."
Jade:
"I knew that I wanted to believe in a God who saw my disability as I did. I do not want to believe in a God who pities me or puts me on a pedestal as society tends to."
Peter:
"My father raised me as a Christian. I was never a person to experience religion in public, but I did believe that God was in charge. As I grew up I moved toward the idea that people are in charge of their own lives, while I still believe in God. My father always said that I was here for a reason and it is because of my belief in this idea that I have survived and beaten the major conflicts that have been a part of my childhood."
Eleanor:
"I was a semi-believer when I was a kid due to my families' beliefs, but I made a personal choice to become a full believer after high school. I've been through many obstacles and health issues from the day I was born, and it took faith and strength to keep moving forward and striving to be the who I am today. My faith has helped me see the person I can be despite all the challenges I face due to my disability."
How does your spiritual view affect how you see yourself as a person with a disability?
Jade:
"As a member of my church, I know that I have great potential and a personal relationship with God. When Jesus suffered in the Garden of Gethsemane, He knew all of the afflictions of mankind, including mine. This means that God knows what my life is like as a person with a disability.I was given this disability to gain experience here on earth, and I'm expected to enjoy my life. My mission on earth is to advocate for other people with disabilities so that they can be happy.Disability is just a way of life for those who are born with it.One day, I hope it's kind of mundane."
Peter:
"I see myself as a bit different and a bit weird, but in actuality, I'm just Peter. I'm as normal as I need myself to be. I'm myself and no one else.
Eleanor:
"My life was up and down with confidence and self-esteem, but as I got older and hung out with those that accepted me for who I am, I saw God through them, and I knew I was on the right path in life.My disability makes my faith stronger, because without it I wouldn't be here and as healthy as I am."
Max:
"My faith gives me a lot more confidence in myself."
Are you able to participate fully in your faith community?
Peter:
"Absolutely, I'm able to participate in my community. I'm the guy who is not able to speak, yet I'm here right now speaking to all of you (through my communication device).No matter what your disability, there are always ways to compensate for everything you don't have due to your disability. For instance, I haven't been able to use my voice since the year 2000--easily, the hardest and most annoying thing to have to deal with ever. Doctors and therapists and school staff in my life offered help. I had a lot of resources at my disposal, but I didn't realize it at the time, because I was still growing up. I just wasn't very keen on such a massive change. Regardless of this fact, I was still given the choice to deal with my disability-a move that I will never be able to speak enough words of gratitude."
Eleanor:
"Yes. I am active in my church. My partner and I have our own ministry."
Max:
"Oh, yeah. Nothing stops me from participating in my community!"
Jade:
"I am able to go to meetings and church services, but I am not included in many aspects of church life. I am not asked to give talks or hold positions in church. People with disabilities should be allowed to hold positions of power. Sometimes church members focus on the person with me when they are speaking to me, instead of talking directly to me. Some members also assume that I haven't had common adult experiences. They assume that because I have a disability I'm an eternal child. "
Why is faith/spirituality important to you?
Jade:
"Yes. It is important for me to believe that there are divine beings who love everyone. The members of my congregation are like my extended family. I know that God is good. He will help me through all my transitions and change.
Peter:
"Without faith and spirituality, there is really no reason to keep going in life--whether that is faith in yourself or the belief that God is helping you through life. As long as you have some form of belief, faith or spirituality, you will be much better off in your travels through life."
Eleanor:
"My faith in God has helped me move past broken family chains that I didn't want or need in my life. It also allows me to give support and comfort to help others."
Does having faith/spirituality in your life help you cope with your disability?
Eleanor:
"Yes, most definitely!"
Max:
"It does!"
"I know that God wants me to gain experience by having a condition but not to suffer. In other words, my condition isn't a punishment. I have a purpose, a mission.
Peter:
"Having faith in myself helps me cope with my disability. I have a million and one reasons why I would never want to leave the house or do anything productive.That's certainly a life I refused to live with since I was little and it's still a life I refuse to live."
Do you find the buildings where you worship accessible?
Max:
"My church is very accessible. I have no problems getting around." Eleanor: "Mostly.A few things could be changed. The button to open up the door needs to be more accessible and stick out more. My church is putting in an elevator on the other side of the church for easier access." Peter: "Certainly I do. The places I have spiritual experiences are any place in public. I have reasons to let my disabilities get in the way of me living as normal life as possible.I refuse to ever let that happen.One thing that could make places of worship more accessible would be for them to have smooth, hard floors so that I can practice the insane wheelchair skills I have developed." Jade: "For the most part. To make churches more accessible, there should be ramps to the pulpit alter and choir areas. It would also be great to put handicap access buttons on the doors of the church. If a there are activities at a church-sponsored event, members should think about making some of them adaptive for members with disabilities. Max: "The minister and his wife are nice to me, but the members of the congregation sometimes act like I'm crazy." Jade: "A pretty positive one. They generally treat me like everyone else.If they don't know me, I tell them I'm imperfect.I make mistakes, and I sin.I have the same basic needs and desires as the next woman.I'm just living my life like everyone else, and, since I was born with a disability, and I don't know anything different." Eleanor: "A more positive attitude outlook and a brighter future ahead." Peter: "This is kind of a confusing question, but the best way to answer this is that I'm very happy that I haven't let my disability stop me. I always look for ways to compensate for what I do not have." Max: "It's all about choice. It's about what people with disabilities want to do.It's up to them." Peter: "If your disability makes you avoid living life because you say to yourself, I am unable to do this because I don't have standard human functionality, then yes, it is really important to become involved in a faith-based community of some sort, otherwise no.I think all you need to do is believe in yourself, and if you choose to believe in another form of religion, whatever it may be. It is completely your choice." Eleanor: "Yes, but I try not to push it with others because I respect their choice not to be part of a faith community. People have a positive outlook on life if they have a servants' heart. They give without expecting anything in return." Jade: "Yes. If I say that one day I hope disability is normal or mundane, the only way that is going to happen is if people with disabilities are true participants in their faith communities--not just faith-based communities, but any community.People need to realize that we are imperfect. We make mistakes and have the same needs and desires no matter what our abilities. Diversity is so important.We are just living our lives. It is important for people with disabilities to be involved with faith-based communities to show that disability isn't a bad thing." *** This article is authored by Charles Davis, a research associate for the OHSU University Center for Excellence in Developmental Disabilities. Charles manages program initiatives in the area of disability and adolescent transition. The conference transcript is used with permission but the names of the panelists have been changed to protect their identity. What attitude does your faith or religion have towards your disability?
Do you think it's important for people with disabilities to be involved in faith communities, if so why?
