Church, Don’t allow disabilities & recoveries to create isolation…

This response must be the mindset of the church towards all its members, regardless of age, ability, or other circumstances: “We need you. No matter how you worship or how you serve, we want you in this church.”

Guest Writer: Maria Kraayeveld
4/9/17Maria

Maria is currently a Graduate Student at Calvin College extending on her degree in Speech Pathology. She serves on our son Nolan’s team at our church and has a heart for helping people of all abilities feel welcomed and included within the church.

Recently, she wrote an essay for her coursework on how churches can grow in opportunity to respond and include people who are stroke survivors. The theme of her paper cross-applies to all challenges people face and how the church can respond. It hits at the heart of the Bible passage found in 1 Corinthians 12 (The Body of Christ). I have asked permission to re-post her essay on BeautifullyPuzzled.com:

Inclusion of Stroke Survivors in the Church
By Maria C. Kraayeveld, Calvin College

Due to communication’s vital role in forming relationships, people with communication disorders often lack a sense of belonging.  Stroke survivors with aphasia often struggle with both the service and other aspects of church life because of the centrality of communication in churches.  Faith communities often respond well to the emotional and
physical needs of these individuals immediately following a stroke.  However, when stroke survivors return home and have to readjust to new life, support dwindles.  To act as the body of Christ, churches must be a community of love: demonstrating patience, respect, understanding, hope, and support for all of its members.respect

Churches have a vital but difficult task in incorporating all of its members.  They are home to the broken; if they only accepted perfect people, nobody would belong at church.  As the body of imperfect believers, churches must incorporate the abilities and gifts of all members.  Otherwise, the entire body is weakened.  Of all types of groups of people, church members should be the most inclined to create a sense of belonging.  As 1 Corinthians 12: 25 states, God desires churches to function in this manner so “that there should be no division in the body, but that its parts should have equal concern for each other.”

As a whole, churches excel in addressing the needs of stroke victims during the “crisis period.”  When individuals arrive at the hospital and even as they begin rehabilitation, church members often jump to action – starting prayer chains, sending cards, visiting the hospital, bringing meals, and helping out in any way necessary.  Many churches have systems in place for these situations, such as Redeemer Orthodox Presbyterian Church, where I am a member.  During times of illness or crisis, an email relaying the news and requesting prayers is sent out to all members and the Congregational Support Committee organizes meals.

Even though most churches respond well during the crisis period, support often slows or stops altogether once people return home and begin “real life.”  Because of the sudden nature of a stroke and its effects (e.g. aphasia), those returning home have an entirely new life to which they must adjust and an identity with which they must come to terms.  Renegotiating their sense of self requires a lot of time and effort for the stroke survivors, which is made more difficult without the support of others.  Some stroke survivors don’t remember much of their time in the hospital, so although they received visitors, they return home and feel as if their churches have ignored them (Goetz, 2011, p. 106).  Two major concerns tend to arise as stroke survivors adjust to their new lives: feelings of isolation and struggling to find a sense of purpose.
Due to ignorance concerning aphasia and the stroke survivors’ specific communication need
s, fellow church members often ignore them.  If they do engage in conversation, it is in an impatient or condescending manner
(Goetz, 2011, p. 108).  Due to the increased time and attention required for conversations with those with aphasia, many stroke survivors’ friend circles dwindle.  In an ethnographic study friendsfollowing 20
stroke survivors, all participants reported narrowed social circles (Parr, 2007).

Stro
ke survivors returning home also usually question their sense of purpose.  During the stroke survivors’ absences, churches must replace whatever positions the individuals held to keep the church and its ministries running smoothly.  Although necessary, this replacement only increases the stroke survivor’s feelings of uselessness.  Often, churches do not invite the individuals to serve in other capacities regardless of spared abilities.

The reason for the decreased support is not unkindness but often a lack of knowledge.  Many people are uncomfortable interacting with those with disabilities because they don’t know what to expect or how to react.  Acquaintances and even friends can “feel awkward and even frightened” (Parr, 2007, p. 111).  Though understandable, these feelings are of course invalid reasons to ignore anyone.  If church attendees are notified of the stroke survivors’ spared abilities and areas of difficulty, they can be more patient and understanding of slow or confusing speech.

Once aware of areas of need, attendees are often quick and willing to rise to the occasion.  For example, a family at Redeemer has a boy with autism who struggles to sit in the sanctuary during the worship service.  For quite some time, they came to church but would almost always leave the sanctuary, so they felt little benefit from their attendance.  They then approached the pastors, who knew nothing about their son but were willing to learn about him and how the church could help.  A team was quickly put in place to stay with this boy during the service and the number of volunteers continues to grow.  Once church leadership is notified of a situation, they will often attempt to find a solution.  At Redeemer and other churches, the majority would like to help, but we might not initially be aware of the need or know how to help.

In order for churches to improve, stroke survivors and their caregivers must initiate contact with church leadership or a committee created to help in such situations.  This group can then relay information to church members via verbal or bulletin announcements or pamphlets put in mailboxes or at the front of church.  With this method, church members are informed of difficulties that the stroke survivors have as well as how they can best communicate with them.

However, notifying the leadership of communicative needs and requesting help requires stroke survivors to accept their present level of language.  The mindset of “getting back to the real me” as soon as possible is part of the medical model.  Particularly due to the acquired nature of a stroke, many stroke survivors adhere to their former standard of language and consider their improvement a failure until they reach that previous level.  This mentality diminishes stroke survivors by focusing on the return to their pre-stroke selves instead of the potential and abilities of their “new normal.”  If stroke survivors do not express their current level of strengths and needs, churches will be less equipped to help.  Consequently, stroke survivors sometimes isolate themselves further by stressing the recovery of all past abilities but never notifying the church of needs or asking for accommodations.

Just as stroke survivors must self-advocate, the church must actively look for ways to overcome assumptions and alter expectations.  It is more important to focus on what the stroke survivors are currently capable of and how we can build on those strengths than focusing on whether they will return to their premorbid state.  This requires churches to meet them where they are at and include their present abilities and strengths.

During the church service, we can incorporate nonverbal and multi-modal forms of communication.  For example, Redeemer has times when the congregation listens to someone sing or play an instrument as well as times for silent prayer.  These moments allow the stroke survivor to be a part of the service without requiring much auditory comprehension, cognitive processing, or any verbal expression.  The church can also incorporate multiple modalities (verbal, auditory, visual) throughout the service.  For example, announcements made at Redeemer are written in the bulletin as well.  Sermons often begin with a story or example, which are easier for stroke survivors to comprehend (Goetz & Bloem, 2015, p. 61).  Although an outline is usually provided during the sermon, stroke survivors would benefit from a written outline or notes provided beforehand.  These small changes can be made quite easily and still have an immense impact.

We must also – and maybe even more so – incorporate these individuals outside of the worship service.  As mentioned, the greatest concerns for stroke survivors are isolation and finding a sense or purpose, both of which are addressed outside of the worship service.  The church must be intentional in producing feelings of belonging, which require more than briefly acknowledging or greeting the individual.  The church must partake in deep conversations and discover ways for the stroke survivor to serve within the church.

To create an atmosphere of empowerment and belonging, the church must reconsider how it approaches all of its members.  A music minister at a Grand Rapids church said, “We need you.  No matter how you sing, we want you in choir” (Goetz, 2011, p. 112).  This response must be the mindset of the church towards all its members, regardless of age, ability, or other circumstances: “We need you.  No matter how you worship or how you serve, we want you in this church.” 

Due to the vastly differing linguistic, physical, cognitive, and emotional factors among stroke survivors, there is no one-size-fits-all area of service for stroke survivors.  Just as all able-bodied members of the church bring different gifts and needs, so do stroke survivors.  The individual and church must together determine which strengths the individual has and how and where they can and want to serve.

Recognizing and appreciating stroke survivors’ full range of gifts coffee.jpgallows them to discover meaningful and fulfilling tasks.  On the other hand, we cannot dismiss the joy found in “small” tasks.  A stroke survivor who was responsible for making coffee noted that “being able to serve and be productive and make a contribution i
s something that I really, really, really had missed (Goetz & Bloem, 2015, p. 253).

Many of the areas that would help these individuals would simultaneously benefit all members and attendees of a church.  Providing multiple modes of communication help the elderly, young children, and anyone that struggles with attention or processing.  Partaking in deeper conversations as opposed to brief greetings form better relationships for both parties.

The church must address feelings of isolation and uselessness in stroke survivors.  Although impairments caused by a stroke negatively impact many aspects of the lives of stroke survivors, they become increasingly disadvantaged once others exclude them because of that impairment.  Thus the amount of restriction caused by their lack of communication is somewhat dependent on the subsequent reactions of those around them, including the members of the church.  As Christians, it is our duty to consider how we can best function as the body of Christ and create belonging for all members, including stroke survivors.

 

 

 

Closing Our Empathy Gaps

By Tim Paauw
2/19/2017

“I DON’T have any empathy gaps!!”

This was my first reaction when reading about the concept of “empathy gaps” as part of a book study I am participating in professionally with the CLC Network. I imagine this is most people’s instinctive reaction when you first ponder the thought. That is because it is a term that by nature digs deep and hits our heart. Innately I imagine we all struggle with this at some level. Allow me to explain…

An empathy gap = a person’s relative inability to put themselves in the place of another person according to researchers John Hattie and Gregory Yates in their book Visible Learning and the Science of How We Learn.

On deeper reflection of this concept I realized that I’m full of empathy gaps, many of which are not intentional but out of ignorance. Often I may think, assume, and sometimes even recommend things to someone (or judge someone) without taking time to first ASK questions with the intention of learning/understanding. Each time I do this, I would suggest that I have an empathy gap according to the definition.

Let me share a few examples to assist in this concept related to our son’s autism challenges and empathy gaps we have seen in other people publicly:

  • When we enter a noisy restaurant with lots of televisions on the walls (you know the type of restaurant I’m referring to), our son Nolan can at times meltdown because of all the smells (food) mixing with sounds (televisions and conversations). His brain doesn’t filter all of this the same way as most people. Therefore, we have found the most effective way to help him enjoy a restaurant experience is to allow him to use a cell phone and watch a movie on Netflix while he eats. This gives him a close and central focus of sound/visual/textile all in one spot that helps him tone out the rest and filter down and calm down.
    • If you are someone who would stare at our family in the restaurant (it happens) and wonder why parents give a son their cell phone during dinner then you may have an empathy gap.
  • Our son Nolan HATES walking into any medical office because he has a memory can photographically recall his past experiences in a location. When we walk into any appointment for our children we carry a plastic bag in our pocket in case his anxiety gets the best of him and he needs the bag. Because he gets so worked up visibly (tears, grunting, pacing the room with hands over his ears) we do our best to sign-in and find a quiet space in the waiting area as soon as we are able.
    • If you are the person in line ahead of us at the counter or the person working behind the counter who can’t pick up on these signs and allow us to “cut” then I would suggest you have an empathy gap.
  • Nolan is a calm kiddo who LOVES friendship and belonging. Because he is nonverbal and has been socially isolated in various contexts, he doesn’t EVER initiate or invite someone to play a game or read a book.
    • If you are someone who thinks Nolan must not like to be with others and prefers his alone time, then you may be someone with an empathy gap.
    • NOTE: Nolan attends a class that has peers constantly learning more about him, joining him in his activities, and inviting him to join their activities. In the cover photo to this post is a scene of one of his best friends from school walking back to class and helping Nolan get there–a few of the words Nolan DOES know are the names of his friends.

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So… how is it that we build up our capacity for empathy? How do we close our gaps?

One of my dear friends gave me a suggestion the other day for a circumstance that I think would provide an answer using “P’s”:

  • Presume nothing (don’t judge someone’s situation without the next steps),
  • Probe using sensitive questions to understand (“I noticed you doing ____, it was a bit different than what I’m used to, could I ask a few questions?”,
  • Patiently Process by listening carefully (Pause),
  • Paraphrase to verify correct understanding (“So what you are saying is…”),
  • Pass on your best understanding to others when context comes up (I used to think ___, but I have learned ___ from a similar situation which may OR may NOT be the case–don’t presume!)

“Dear friends, since God so loved us, we also ought to love one another. No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.”
~1 John 4:11-12 NIV

 

“With the LORD”

By Tim Paauw
February 15, 2017

“When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” Isaiah 43:2

fire

These are the words from my grandfather, Don Paauw’s, favorite Bible verse. I know because I was blessed when my grandmother asked me to read them aloud at his funeral in on February 15, 2013.

They have been words that are etched on my heart and serve as a great visual when life brings trials, we all have been there and some still are walking faithfully through the waters. In these moments God allows us to be beautifully puzzled. Our heads spin. It is a beautiful thing because it humbles us and rightly reminds us that we depend on Him.

Whether it is a critical car accident, a cancer diagnosis, a deep depression, or another situation that brings you to the deep end before you are ready to swim it is in this moment we must pause and remember the calming promise that God is WITH us. This promise is even found in the meaning of His name, Immanuel.

One year ago, I sent an email update asking for prayers on behalf of my mom as she sat in her hospital room battling for her life. One of the prayer requests that day was that her bones would heal as she had just come out of a major surgery reconstructing an ankle, wrist, and arm bones.

Tonight, we are SO grateful that she has been home for the past few months and that the feeling of urgency and worry over her vital organs  doesn’t currently loom so strongly. However, I am writing to ask for a similar prayer request to the one of last year regarding her bones.

One of the largest concerns in these past months involves her right ankle bone and the infection surrounding it. She has faced the strong reality that this may cause a need for her right leg to be amputated just below the knee–quite a dreaded thought.

On Friday, she will be heading in for a surgery that will have her ankle opened up, scraped clean of the infection in the bone and tissue, and thoroughly washed out. The surgeon will place a “spacer” in her ankle that will provide a direct source of an antibiotic and serve in place of the missing talus bone. This is required in an attempt to save her right leg.

If successful, she would likely be able to go in again in a few weeks to have an external brace installed from the top of her calf to her heel which would bypass the ankle and allow her to begin to bear weight again for the first time in months!

Please join us in praying for God to direct the surgeon’s hands, for our mom’s anxiety to decrease, for the infection to disappear and healing to happen, and most importantly that God’s mercy and grace may shine brightly throughout this process.
No matter what happens as the next “step” in her healing, our family can already say God is with us, He is greater than any fear or struggle that we face, and His plan is far greater than any we could imagine (Proverbs 16:9).
I believe my grandfather’s verse (Isaiah 43:2) is the ultimate testimony of God’s mercy. God doesn’t allow us to pass through the waters or walk through the fires of life alone.
The plaque found at my grandpa’s graveside serves as a regular reminder for those who mourn that true healing, hope, and perfect life is yet to come to those who believe and hope in Christ. Next to Don Paauw’s name etched in stone is “With the LORD”. As we pray for my mom and many others we love, let’s most importantly praise the Lord for His Amazing Grace that knows no limit and know that in Christ the answer is already YES and AMEN!
Fear Not. God is WITH Us (Romans 8:31)
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