welcoming

The Dichotomy of Function Hides a Even More

 

By J.C. Mitchell

Years ago I remember sitting around a fondue pot with my friend Dick and many others.  Dick was at that time an octogenarian, and I was in my late twenties, and around the table were people of all ages in between.  One person observed how wise it was that Dick had friends of all ages and it was mostly through church he developed these relationships.  Dick had one rule: the word “old” and “young” were not allowed.  Older and younger were unnecessary, as age is relative.  This was a great lesson I have internalized.  Dick also mixed bourbon and sweet vermouth in a gallon container so Manhattans were easily at hand, but alas I do not have the energy to handle a Manhattan nightly, so I keep my vermouth and bourbon in their respective bottles in my cabinet.


So in the autism world you have heard the dichotomy of functionality.  Sometimes one is referred to as “High-functioning” and others as “low-functioning.”   It may seem descriptive but it is an arbitrary dichotomy that really does not say anything about the individual.  Using the illustration of age, one may call someone old based on their age, their fashion, their attitude, their appearance, or, based on the perception of the one saying the word, old.  This is the same with functionality, and it says nothing about a person with autism.


I must confess, having a son that barely communicates verbally, is far behind academically and socially  and is in diapers, I have desired to use the term “low-functioning” to make it clear what we are dealing with, but I remember my friend’s words about old and young, so I translated it to “lower-functioning” and “higher-functioning.”  But upon reflection this does not translate in the same way as age, for when you use these terms even as a descriptive it is only for those with the developmental delay and not for all people.  Thus even using “higher” or “lower” creates this artificial dichotomy just as much, and I was quite aware of it, but alas whenever talking to people about my son outside of the autism world (yes we have culture and it is just as nasty and nice as any other culture), I feel forced to use these overly simplified terms to help the person I was talking to understand as they felt comfortable.  


I knew it was a problem but until I saw a friend’s Facebook post that read, “Every time you say ‘High Functioning Autism,; I die a little inside,” I realized I had been badgered by the ableist mindset to use their terms, and even with my tweaking to say it more relatively I had been perpetuating the false dichotomy that is part of anti-autism mindset of our culture.  My friend makes it clear it is not a compliment nor a description that has any real meaning.  The only possible meaning is that one with autism who is given the descriptive high or low is not a normal person who simply proves how they function through other means.  The real dichotomy this functional classification is people who are autistic and those that are not, with an assumption those who are not are the most functional.

 
If we are going to say we welcome everyone in our churches (or anywhere) no matter their ability, let us not use language that assumes autism to be less a person.  And like me, let us learn from those that understand this dichotomy do have the voice to teach us, and not assume we understand from our biases. 

 

tip of the iceberg

tip of the iceberg

Ten Things You Should Know To Welcome People of All Abilities to Church

By J.C. Mitchell

1.    If you have had one or even a few people with special needs in your ministry, this does not mean you know how to welcome all.  Very often when I tell a pastor about my ministry at Open Gathering they start telling me their one success story (which I do enjoy learning from), but they do not seem to understand there is more to do to welcome all.  This is not unlike someone saying there is no more racism because Obama was elected president.

2.    Accommodation is important, but it is not in and of itself welcome.  Having a ramp at the back door may be a financial reality, but if the main entrance is accessible to all that is much more welcoming.  

3.    Having a cry room is great for babies, but children that are old enough to start learning to sit in the sanctuary may make noise. Suggesting that they should go to the cry room is inappropriate.  Yes, some parents would rather go to the cry room, even with a kindergartner or older child, but it should be their choice.  Many children with autism, for example, need to learn by doing the same thing, so going to the cry room the first time will become the way the child goes to church, creating an extra and unnecessary step in learning.

4.    Using person first language should be the assumed way of talking about a person with disabilities. (For more information check out Arc's Website)  Yes, there are some that use their different ability as a proud identifier, and if they desire to use a descriptive such as “aspie” of course use that when referring to them specifically, but one’s name is still preferred.  This is less about offending one with a different ability, but to help those to see the individual and not the diagnosis. 

5.    Do not diagnose.  You may be obsessive and compulsive, but that does not mean you have Obsessive Compulsive Disorder (if you suspect you do, you should get help as well as a diagnosis).  This goes with many diagnoses and when a person hears others being labeled incorrectly, you belittle those that actually live with that diagnosis.

6.    Avoid the word “struggles. “ Unless you say struggles as a descriptive of the way our culture accepts and includes people with different abilities.  

7.    Do know that life is harder, more expensive, lonely, and stressful for families with someone with special needs in the family.

8.    Never assume, as you know what that spells.  Thus keep this question in your pocket, “how can I help you?” rather than “do you want me to show you the cry room” or “Don’t you think your child may be happier to wait in the fellowship hall until Sunday School” (Most kids would be).

9.    Talk about this welcome openly and be open to places you fail.  It may be not possible to include every child in a program like VBS, but work with the parents to include all children.  Generally if you tell me, “Your son is welcome and we will figure it out” after I tell you he has a disability, I am much more suspicious than the church that asks specific questions with a desire to make it work, for the latter knows it is hard work.

10.    When a parent tells you their child has a disability or a diagnosis, refrain from saying, “That’s OK” or “I am Sorry.”  The latter to me is less offensive for it is honest, but the former is simply annoying, for who are you to tell me if it is OK or not?  I realize you mean well, but to say, “thank you for sharing” or bonus “thank you for sharing, and how best can I interact (or help) your child and/or you?” is ideal.  Often the reason we feel compelled to share with you that our child has a special need (or if one self-advocating) is that we think you should know, and we already know it is OK and at the same time awfully difficult.  So if you can go beyond the pleasantries, you will be much more welcoming.

11.    Bonus: Know that the work to welcome all will never be completed, and there is no program or book that will give you all the answers, but I do suggest these three books to develop a theology of inclusion:  

Vulnerable Communion by Thomas Reynolds

The Bible, Disabilty and the Church, by Amos Yong

The Disabled God, by Nancy Eiesland

 

Practicing Inclusion

By Rev. Mindi

“Inclusive” has become a buzzword descriptor among churches these days. Perhaps you mean it to include LGBTQ individuals and families in your congregation. Perhaps you mean it to include people of different ethnic backgrounds. Maybe it means including people of different economic statuses.

Inclusion means including everyone. It doesn’t mean creating a special program for or a specific mission outreach to a certain group of people.  Inclusion means you actually include someone: you value, encourage participation, listen to and incorporate all people into your congregational life.

Inclusion is actually very difficult to accomplish. Most of us have the best of intentions but don’t actually follow through. Most of the time, our inclusion is actually under another buzzword, “Welcoming.” We throw together a welcoming statement and say we welcome all people. We might even go to the next level and say we welcome all persons regardless of age, gender expression, sexual orientation, racial or ethnic identity, economic status, ability, etc. etc. etc.  However, there are places where we specifically do not include people and we need to not only be aware but acknowledge this.

We often do not include children, whether it be in worship (though many churches do include children to a degree, but we still often send them out after the Children’s Message) or in church business. Sure, we might ask them their opinions or talk with them in children’s sermons about things happening in the life of the church, but rarely are they included in business meetings or given the right to vote (my current church is in the process of revamping its constitution and it still states that members have to be age 16 in order to vote).  We have our reasons—they are not old enough to understand, or they would just vote the way their parents did giving them twice the vote, or other reasons we pass off. We also don’t include homebound members (often still called “shut-ins” in the life of the church) because they are no longer able to attend.  Sure, we visit them now and then, but we don’t include them in the business of the church, or the worship, for that matter.

And we do not include people with differing abilities, usually. We assume persons who use a wheelchair or walker, or those who have long-term illness, mental or physical, cannot participate in the life of the church. Sure, we welcome them to worship and we may build ramps and make our restrooms accessible, but we often do not ask them about participating, assuming they cannot.

Can a person who uses a wheelchair still hand out bulletins and greet people? Can a child carry the offering plate? Can a person who is ill still help make decisions in the life of the church? Can a young teen have a mind-blowing idea that could change the church? Of course!

Look at your congregation’s practice of inclusion. First look at what you say about yourself. Then look to see what you are really doing. Who is in leadership? Who is involved in worship? Who is involved in outreach or other ministries? What is the diversity represented? Even if there is little ethnic diversity in your congregation, look for other diversities. Are people with differing abilities represented? Are people of different ages represented? Economic status? How do you include home-bound members and those who deal with long-term illness?

How are you practicing inclusion in the life of your church? Is it a matter of lip-service, or are you doing your best to include people from all areas of life?  If not, how could you improve?

Here are some recent examples from churches I have known that have made a change to practice inclusion better:

 

-Including a ramp for the choir loft so that singers of all abilities could participate.

-Moving the choir down to the sanctuary floor for the anthem so that others could participate who could not get to the choir loft.

-Inviting a young man using a wheelchair to collect the offering

-Including a teen with Asperger’s on the youth outreach committee

-Making all restrooms accessible and changing the signs to “Restroom” with no gender indication

 

What can you do to practice inclusion better as a church community?

Autism Awareness in Your Congregation

April is Autism Awareness Month. As you may have figured out by now if you are regular readers here, JC Mitchell and I are the parents of AJ, a 4-year-old with autism. We’re not the first parents to have experienced not-so-welcoming churches, and we’re not the first clergy parents of a child with special needs to advocate for their child. There are some great resources available and I encourage you to check out resources on welcoming people of all abilities.  You can also read back through JC Mitchell’s posts or mine, especially The Starbucks Welcome

But here are a few tips to help get you started when a family with a special needs member asks about coming to your church or shows up on Sunday morning:

--First, welcome them. Greet the family like you would anyone else. Do what you would normally do for new visitors to help them feel welcome.  In one church I visited, a few members chose to sit with me in the back where I was sitting, so I was not a visitor with my child by myself.  It’s a good idea for any visitor to have someone sit with them and worship with them!

--Ask questions about what would make them comfortable and what would be helpful.  For example: “What is the best way to interact with your child?” “How can we help you this morning?”  

--If the family has a child and you have childcare or Children’s church during worship, invite them to those places but don’t pressure them. Some families prefer to have their children in worship with them, some children won’t leave their parents and go with strangers.  All churches are different, and many newer churches are including of all generations.   If a child goes to a different space than the worship service, ask questions about what their needs are and what can be done to help.  Don’t assume you have to have professional child care workers who know about autism or other special needs (most parents haven’t had professional training, either!) Just ask basic questions about their needs, especially any dietary restrictions or allergies (just like you would for any other new child) and assure the parents their child will be safe with you.  Make notes and listen if there are any specific concerns (for example, our child will wander if he is in an open area—he likes to explore).  It is ok to ask a parent to help with a specific situation—such as using the bathroom if the child has toilet issues.  But by all means, do your best to allow a parent to return to worship or Adult Sunday School as you would with any parent.

--Have child and adult “helpers,” if you have other children in your church.  Identifying a slightly older child or youth who likes to help with children can be a great asset. For example, there is one older child in my husband’s church whose job it is to keep a specific eye on AJ so he doesn’t wander off during Children’s Church.  Other adults who maybe don’t want to be drafted for Sunday School might be willing to help out with a child with specific needs.

--If a person with special needs remains in church, know that they will not all respond the same. Some may be sensitive to loud noises; others (like my child) may make some loud noises. Some people have to get up and move around. Some families choose to sit in the back and others choose to sit up front.  As I have always shared, I often hear the sounds of adults saying “Shhh!” louder than I have heard any child’s noise.  Know that there may be some distractions, but as a special needs person gets used to the worship, the routine and structure, they will be more comfortable and surprise reactions will be reduced.

--Don’t assume all families of people with special needs want to immediately connect with other families of special needs—most likely, they just want to connect with this new congregation!  If they ask about other families with special needs, then help make the connections, but otherwise, introduce them and get to know them like you would anyone else.

--If a family looks like they have had an uncomfortable experience, ask them what you can do next time to help be more welcoming. Show that you are willing to listen and learn. 

See a pattern here? Most families with special needs simply want to be welcomed like everyone else.  And all too often, they aren’t.  There’s an assumption made by well-intentioned church members that the needs are greater than what we can care for, than what we can provide.  There’s worry about situations that might come up. Most of the time, parents have thought this through before even stepping through the door. Most families are aware of what information needs to be shared to make a comfortable experience for everyone.

I know that as a pastor, I don’t always have it right.  There are times I still have failed to make people feel welcome, but I try to learn and work with my congregation to help make children and adults of all abilities feel more welcomed and included in worship.  So this month, for Autism Awareness, let’s all try to do what we can to be a little more welcoming of people of all abilities, members of the family of God.