Making Our Presence Known

download   What do you get when you cross an extroverted middle-aged woman with a profound developmental disability with a ton of unsuspecting tourists at the small town diner?  The answer: lots of confused looks, blank stares, and uncomfortable shuffles.

We live in a society that promotes “wellness.”  This unfortunately has redefined our perceptions of beauty, perfection, and strength.  Instead of being humbled, we are prideful.  Instead of being open to wonder, we believe that wonder only exists in those exactly like ourselves.  That’s why it’s such a refreshing moment for me whenever I visit a local store or restaurant with Maggie, one of the core members I live with in Cape Breton.

Maggie is always very energetic and active.  Upon first meeting you, she will often offer a firm handshake and perhaps a kiss on your cheek.  Maggie does not have this sense of “personal space” nor does she understand awkwardness.  Instead she relishes in the attention that she believes people are giving her.  She likes to always be at the centre – the one recognized and noticed.  Which makes complete sense because she has spent most of her life on the margins – being unnoticed, ignored, and walked over.  For Maggie, a quick hello is not enough, she expects a bear hug.  A slight wave is barely anything, she demands a full-on embrace.

When I first started taking Maggie on outings I admit that I felt strangely out of place and even embarrassed.  I wasn’t sure how others would take her invitation to be included in her life, so I used to stand there awkwardly.  Half the time I was trying to either prevent her from saying hi or to tear her apart from the unsuspecting shopper who she had already snuck up to.  However, recently my attitudes have shifted.

What is so awkward about a person with Down Syndrome, autism, or cerebral palsy saying hi to someone at the corner store?  I know it is a sad reality, but I sometimes wonder if these same abelistic mentalities still sneak up on those of us who work in the field, are caregivers, or parents of someone with a disability.  We, of all people, should be ambassadors, should “know better” but maybe there is still a part of us that has bought into society’s ideals.

A few months ago I attended a brilliant disability theology conference up in Belfast, Ireland and I remember one lady sharing with tears in her eyes about how a young man at a grocery store needed her help, but because she was not his caregiver and did not know him, she basically ignored him and went on with her own shopping.  Months later this thought still terrifies her and makes her feel incredibly guilty.  She also has a child with a disability and has worked in the field professionally, so she couldn’t wrap her mind around her response.  She didn’t know what caused her to panic in that moment and to feel awkward and shy.

She’s not the only one.  I know I’ve done it many times myself.  When I’m in L’Arche I’m full on involved in our core member’s lives.  I don’t mind helping in anyway, and personal care is not a strange or foreign concept to me.  But the moment I’m on my “day off” and at the grocery store it’s like I can become a completely different person.  I don’t know why this is.  I could blame society’s expectations, but I really think it comes down to how we personally think and feel about disability issues.

It can be difficult to know how to relate to someone who is quite different than we are, but it is almost always worth the investment.  We can start small.  When you see someone struggling at a grocery store, don’t walk into the next aisle, treat them like a child, or ignore them.  Ask if they are alright and if you can assist them in any way, even if it’s just opening a door or pushing that pesky shopping cart through those annoying turnstiles.  Approach the individual as an equal and as an adult, don’t ask questions in patronizing or condescending ways.  Don’t change your tone or your vocabulary to sound like you’re addressing a two year old, ask the person if they need help the same way you might like someone to ask you.

If you see a child with a disability having a full out tantrum in the store, don’t walk away or offer the parents a sympathetic or condescending look.  See if you can be a needed presence by distracting the child with humour.  Don’t make the parent feel like there’s an “us versus them” mentality.  If you’re a parent, chances are you’ve experienced the exact same thing plenty of times regardless of whether or not your child has a disability.  Offer compassion and empathy, not judgment.

And if you’re accompanying someone like Maggie to the store, just let her be herself.  Don’t hinder her from saying hi and reaching out.  Don’t take ownership for how you think other people will react.  Open your heart and mind to the possibility that maybe this type of interaction is exactly what the other person needs.  Maybe they are having a really difficult day, and Maggie just intuitively knows that and wants to cheer them up.  Or maybe, Maggie, like all of us, just wants her presence to be known.  Wants us to stop living in our abeslistic bubbles.  Wants to be heard, cherished, and loved.  Wants to be free to express herself.

Where’s the Justice in That? The Social Exclusion of Adults with Learning Disabilities and What the Church Can Do to Fix It

WP_20160610_003   Who is welcome at your church?  What makes you so sure?  What evidence do you have to prove this?

It was a typical Sunday like any other.  I walked into the sanctuary at 10:30am, quickly found my seat in the balcony with my friends and prepared my heart for worship.  I love my church very dearly and I was excited about this being one of the few Sundays I had off work where I was actually able to take in the whole service without rushing off afterwards.  However, my thoughts were elsewhere.  You see, this past weekend I attended the Tio Conference for Disability Theology and Ministry at Belfast Bible College and I could not get the presenter’s prophetic words and challenge to the church out of my head.  Dr. Jeff McNair (the keynote speaker) had made the case that less than 20% of adults with severe learning disabilities are being properly included into the life of the church.  He mentioned the various ways people with disabilities are often ignored at worst and tolerated at best, and he poignantly asked how we, as church leaders, can claim to love our neighbours when our neighbours so blatantly do not include those who are different from us.

Sitting in the balcony provided the optimal opportunity to survey exactly who was in our congregation that Sunday.  I was very pleased to note the wide range of age demographics and cultures represented.  I find it an incredible testimony to my church’s witness in the community that we have young adults and seniors worshipping side-by-side, and that we have at least 30 nationalities in attendance (which for a city like Edinburgh that is much less multicultural than Toronto or London is quite impressive).  I was touched to see that people of all socio-economic ranks were welcomed, and I was happy to note that people in various stages of their faith walk were affirmed.  However, my heart lurched in disappointment at the lack of people with disabilities who call this church their home.    Dr. McNair mentioned that the mark of a exclusive church is silence… and what did I hear during the morning service?  Not loud cackles, not an excessive humming or stemming, and not vocalisations… but sheer silence.  The sound of a passive audience listening to a sole presenter (which is exactly what the majority of churches around the world are subjected to on any given Sunday).

During the conference, McNair mentioned that we were part of history.  He noted that there are very few seminars and gatherings for church leaders around the world to discuss topics related to disability theology.  He asked the question “why is this?”  It is to our great shame that even developed countries like Canada, the U.S., and the U.K. that are so far ahead on so many other areas of ministry are so far behind when it comes to relating to those with intellectual and physical limitations.

This is why having a conference such as Tio (a derivative of the classical Greek word meaning “to lift up, to honour, to advance, to value…in essence to bring someone from invisibility to visibility and to give them a voice) is so important.   Having been in the disability field for the past three years I can attest to the not having many of these opportunities previously available to me, yet I was inspired by the amount of people who attended this inaugural event.  Roughly 100 people were in attendance from Northern Ireland, England, and Scotland and the participants included Sunday school teachers, pastors, lay leaders, parents, and scholars as well as a few people with developmental disabilities themselves.  Sessions were inclusive for all people with a separate option for a specifically designed seminar for people with special needs.  I was also beyond thrilled to see the wide range of experience represented.  We had people who were basically “thrust” into the role through having children with disabilities, people who chose the field for themselves and have been pioneering ministries for the past 20 or 30 years, and people (like myself) who are relatively new to this area.  We even had a few ministers in attendance who admitted to not having a specific passion in disability ministry, but who nevertheless came out because they see the value in at least beginning to question and think about some of these topics.

The sessions ranged from highly academic to more practical and I am happy to inform you that all the materials will be made available for your personal download (at a small fee) in the near future.  Personally, I got a lot out of the conference, but I also realize the need to now start putting these thoughts into practice.  Otherwise, they will forever stay at the level of academic rumination.  Therefore, I would like to suggest a few simple ways that your church can become more inclusive for people with disabilities:

  • Rethinking Loving Our Neighbour

Our fundamental calling is to impart the love of Christ to each person drawing them deeper into God’s immeasurable peace. We are called to love our neighbour as ourselves – to affirm their worth and to give them greater honour than we give to ourselves. BUT valuing another person takes sacrifice- it’s hard work. It is about recognizing the inherent worth of each person, their gifts, their strengths, and the presence of the Christ light in them.

For too long we (as individual Christians, the church and general society) have failed to do exactly this especially when it comes to people who are different than us – primarily people with disabilities. Many pastors will claim they love all people equally and want all people to come to the church, but often the lived out reality and logistics communicate something extremely different. Christians are called to be trail blazers, set apart from the world, but unfortunately, we often mirror worldly ways of approaching someone with a disability, further adding to hurt and marginalization.

It is not enough just to “tolerate” a person with a disability. On all sides and in every way we need to move from exclusion to inclusion, from complacency to change. We need to start thinking about these things and not being okay with the fact that even after all these years less than 20% of people with profound learning disabilities are welcomed and fully included into the life of our church. People with learning disabilities also can be jaded by the church and subsequently reject Christ so we need to think long and hard about the implications our apathy can have on others.

To quote Wolf Wolfensberger: “Indeed without significant cost, an action should not be viewed as advocacy…even if it is otherwise valuable action.”

  • Putting Yourself In Another’s Shoes (Quite Literally)

Last year I was able to present a seminar at the Cahoots Festival near Milton, Ontario.  At this conference I provided participants with a number of activities to begin thinking about what it might be like for someone with a disability.  Two of these activities included trying to peel an orange with one hand and trying to stand and walk with a handful of marbles in either shoe.  The people who tried these activities admitted that both tasks which normally would be quite easy and done automatically were hampered by having an apparent disadvantage.  Yesterday when I was at church I began thinking about how to take this even further.  Do you ever wonder whether or not your church would be accessible to people with disabilities?  Why not try to wear heavy earplugs during the service and see if you can still get something out of a primarily aural experience?  If you need glasses to do virtually anything, imagine what church might be like if you took off your glasses or contact lens for the duration of the service.  On a much smaller scale, as someone who struggles with hyperactivity… I try to imagine what would happen if I didn’t bring my little stress ball to church or if I failed to bring my notebook and pen, then I try to magnify that by about a hundred.  You get the picture.  So much of what we do in our churches is simply NOT accessible to people with physical and intellectual disabilities because we do not KNOW what it would be like to be in their shoes.  So why not ask someone with a disability what their experience of church is and then try some of these activities out for yourself?

  • Making Disability Ministry a Priority

I get it.  We all have different passions and different areas that we think are the most important to focus on and personally I think that’s great.  I think it really adds to the diversity of the Body of Christ and that we can all learn something from each other.  But sadly, it seems that while many churches are focused on church planting, evangelism, and outreach (very important roles), few churches care enough to think about what it would be like to plant a church that includes people with disabilities.  Few churches employ a pastor with a huge heart for disability ministry and few mission organizations ask their participants if any of them would be interested in creating a ministry experience that works side-by-side someone with a disability as a co-labourer.

Think about your church.  Is disability ministry a priority?  Why or why not?  Do you have any interest in making it a priority?  I believe that the Christian calling encompasses all people.  That we are called to witness and reach out to everyone – including, and perhaps especially to, people who are quite different than we are.  Those who are marginalized and often ignored and overlooked.

In his inspiring article entitled What Would Be Better? Social Role Valorization and the Development of Persons Affected by Disability found on the incredible website: http://www.whatwouldbebetter.com/ Jeff McNair and Marc Tumeinski pose the following question:

What does our shared vision of Christian community look like? Who is present in our biblical vision of community? How can the inclusion of vulnerable people better reflect the Gospel vision and therefore strengthen our church community? How can we more closely approach this vision here and now within our church? Given the actual makeup of our membership, might we unintentionally or unconsciously be putting some groups of people outside of this vision? What would be better?

How would you answer this question in regards to yourself?  Your church?  Your Christian university, seminary, or intentional community?  The global church?  Society as a whole?

I believe the key to good disability ministry lies in having an inclusive approach, not in merely being insular.  What I mean is that first and foremost we need to find ways to minister and include people who are different from us.  BUT then we cannot stay on the level of our church having an outreach – we need to also think about how we can more fully integrate with society.  For the past three years I have worked with L’Arche (a Christian intentional community for adults with developmental disabilities).  L’Arche does good work.  L’Arche is an excellent sign and beacon to the world that people with learning disabilities belong and should be valued for their contributions to society.  L’Arche is a great service provider and care home for many adults who would potentially have nowhere else to go.  BUT L’Arche also has one major flaw – we have the tendency to become extremely inwardly focussed.  Working in L’Arche in both Canada and the U.K. I am often surprised at how few people (even in local churches) know who we are or what we are about.  Those who have heard about L’Arche often only know it from the writings of Jean Vanier and Henri Nouwen, rather than as a result of visiting our community for a chapel or supper and actually experiencing the mutual life-giving relationships we share first hand. This lack of general knowledge has sadly even led to a few people believing that I am involved in a cult!  To me this points towards the fact that although we, as a community, are thriving in so many areas, we still need to improve on becoming more outwardly focused.  On thinking about how to work with other service providers and churches to continue to create and foster more opportunities for disability ministry rather than just the needs of our own immediate community.

I have given you a lot to think about here, but I hope it helps set you on the path towards establishing and maintaining disability ministries within your own context.  Next time you go to church, why not have a look around and make a mental note of who is in attendance and what you can do to bring those who aren’t already there into the fold.  And next time the service is completely quiet, why not make some noise… because an inclusive church should never be silent.