Downs With Love – A Play Review

20180612_211601 Human relationships are complex and fascinating, but what happens when a girl with Down Syndrome falls in love with a man who ends up being her carer’s boyfriend?

In “Downs With Love” a play that toured throughout Scotland, Beth (played by lead actress Abigal Brydon) becomes friends with Tracey, her support worker.  Tracey and Beth get together multiple times a week to sing, watch TV, and do chores, but Beth wants to take Tracey on a special outing.  Every Friday night, Beth goes to the local pub where she listens to a singer named Mark.  Mark is handsome, has an angelic voice, and is around her age, and Beth hopes that he will one day fall in love with her.  At first Mark ignores her and finds it difficult and awkward to relate to someone with a disability, but as support worker, Tracey, urges him to at least be friendly and kind to Beth a friendship forms.  Mark, Tracey, and Beth all begin spending time together, going to the movies, going out for coffee, and going bowling.  Eventually Mark works up the courage to ask Tracey to go on a date with him.  Tracey does not feel comfortable going behind Beth’s back, but she agrees as long as it is just a casual date, not a “date date”.  Yet as Mark and Tracey grow closer together, they both start getting more and more distant from Beth who truly believes that something might eventually happen between her and Mark.  Soon the day comes when Mark and Tracey have to break the news to Beth, a moment she does not handle well.  She is devastated and feels like her friends have betrayed her.  She questions whether it is all about her disability and if she were simply “normal” if she would have the chance for love.  Yet, at the end of the play, all is remedied as Mark and Tracey get married and Beth forgives them both and is truly happy for them and so their relationship continues.

The play “Downs with Love” is based off of Beth’s (Abigal Brydon’s) own experience.  Abigal is part of a local theatre troupe called Inspire that welcomes actors of various ability levels.  Abi has even succeed in her dream of being a professional by taking classes at a local college, though her ultimate dream is to one day be on television!  Throughout the play, Abi weaves in her past humiliations of being bullied in school and seen as different, as well as her day-to-day routines and her own previous relationships.  It is a play that is at once realistic, thoughtful, and thought-provoking.

After watching the play and having the question and answer session with the panel, I came away with so many questions about how our society perceives people with disabilities in relationships.  Do we view that as awkward or romantic?  Do people with disabilities have enough resources to learn about relationships as the general public?  What is right or wrong in a relationship for someone with a disability, who decides that, and why?

This play really showed me that it is so imperative to support those with disabilities to accomplish their dreams in the same way as we would for anyone else.  It is important to be honest, upfront, and to be clear about boundaries.

I have never seen a play quite like this one, but I believe this is the start of something amazing when it comes to disability inclusion in the theatrical world.  The director, Suzanne Lofthus, has so many upcoming dreams for continuing to make similar plays and maybe in the future, films.  Until, then, I am excited to see more actors with developmental disabilities taking centre stage and reminding us of how love can be a possibility for us all.

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Why I Went to a Funeral for Someone I Never Knew

Yellow-Flowers-Coreopsis-Walters-Gardens-Inc  Death – a word we all try to avoid, but that we know is inevitable.  It isn’t easy in the slightest to go to a funeral for someone you knew well and cherished, so why would one ever go to a funeral for someone they never even met?  This is the question I found myself asking as I piled into a room full of about 40 people from my L’Arche community in Inverness, Scotland.  The room was full of people wearing black, the room was also full of people wearing yellow.  A core member (person with a developmental disability) named Fiona had recently passed away and her favourite colour was yellow.  She liked the brightness of it and how it reminded her of the sun, of warmth, of laughter, and of friendship.  She even moved into a L’Arche house named Grianan, the Scottish Gaelic word for “Sunshine”, directly linked in a duplex style housing to another house named Saorsa meaning “Freedom.”  And that’s what Fiona was.  She was free, even despite her physical and developmental limitations, because she knew she was loved and held by the care and support of many who loved her.

Her funeral was much longer than any other memorial I have ever attended, but time seemed to be suspended as core members and assistants alike shared poems, stories, and pictures of Fiona.  As they said their final farewells and wrote on yellow cut-out hearts to be placed in a specially decorated box all the things they would have wished to have said to her but never had the opportunity.

Fiona’s boyfriend also spoke.  He and Fiona had been partners for a long time.  They went on trips together, shared meals together, and he visited her every Sunday at her house.  He  recounted a time when Fiona first asked them to be a couple.  His exact words were that she said “you and I should be together so that we can make others laugh.”  He even referred to her as “a cheeky little monkey” – a great term of endearment over here in Scotland.

I was off that day.  I was under no obligation to attend her funeral.  She hadn’t been part of the community for over 2 years as the result of her declining health which meant other arrangements had to be made.  I never met her.  So why should I use my free time to attend a community gathering as solemn as this?  The answer is because I feel memorials are a way of respecting and honouring someone’s life.  In our ableistic culture we tend to tote and idealize celebrities who pass away because we feel they have made a significant contribution to our world.  When a movie star, singer, or actor dies his or her name is mentioned in all the newspapers and tabloids.  When someone who has made a contribution in the field of medicine, scientific inquiry, theology, or psychology passes we feel a sense of gratitude for their commitment and inventions.  But oftentimes, someone with a developmental disability can be ignored.  And that’s not the way it should be.  The Bible tells us that “God uses the foolish things of this world to confound the wise” (1 Corinthians 1:27) and L’Arche has taught me that God also uses those whom society deems unfit and even worthless to teach us what humanity, love, laughter, and life is really and truly all about.

Listening to people share that day brought me back to this place of realizing how everyone who walks this earth has something to share and contribute.  Fiona was a person with a disability, but she was also so much more.  She was a girlfriend, a daughter, a friend, a traveler, an adventurer, an explorer, a dancer, and that only begins to scratch the surface.  When the box got passed to me to stick my little yellow heart into I wrote, “Dear Fiona, I never knew you, but you’ve left a legacy.”  And that’s exactly how I felt.  She taught assistants from around the world to interact with her and get to know her.  Not for her disability, but for her personality.  Not because they were paid to care for her, but because they entered into a community in which she was a part and in which she urged them to get close to her and to be her friend.

This week in community has been full of ups and downs.  Death is not easy for anyone, and is especially difficult for people with disabilities to process.  But we’ve also had laughs and joyous occasions.  Also this week, one of our core members celebrated his 70th anniversary with great fanfare and a ceilidh band.  In his own words, “birthdays are a way to thank someone for being born.”  How true that is – people with disabilities are often shunned and sadly seen as a burden, but that’s not how it should be at all.  So both in celebrating a birthday and in honouring the legacy of a great woman, the message is the same – thank you for being born, thank you for living, showing us yourself, and teaching us the true values of humanity and love.  But most of all, thank you for your continuing life that whether in this world or the next continues to shine forth, proclaiming a message of equality, respect, and tolerance.  Thank you that that message can impact even those you’ve never met because you have left a legacy.

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.