Posts Tagged ‘Disabilities’


It has always been a weird situation when folks try to make out you’re some kind of super hero or special person for being a parent of an exceptional child. Really? I think all parents that engage with their kids to support them in becoming who they are meant to be are quite amazing regardless of the labels society places on the child. See, the only real trash parent I see are the ones that decide a coping or discipline method is to beat a child or spouse or sexually, emotionally and mentally abuse them (which is why I cheer the Canadian Government’s $7.5 million investment in kid’s help phone during this time of social distancing, perhaps silence will break and we can rescue more from the darkness, but I digress).

I’m a parent of a 14 year old and a 12 year old. Any labels through medical or societal are not their to define my children, rather they are their for communities and society to know what my child needs to thrive, discover, belong and be the most awesome them, they can be. Full stop. Being a parent is hard. Each of us has our own strengths, areas of growth, challenges, and then we are given mini-mes that become a ramped up mirror of our best and worst traits (hey, I knew I was a sarcastic so-so, but trust me when my kids riff on me its really obvious lol). So why do we need to sub-divide?

Within the exceptional child community, why do we sub-divide further? With comments such as, you can’t possibly know because your child can do x-y-z-… we are conditioned to constantly be in apology mode for a spasm, a sound, a spasticity, a stem or a tick…yet…

The world around us, can be as assertively a-holey (to borrow on of my daughter’s favourites of skirting swearing) it wants towards us. Religious can say we did something so our child is being punished for sin, that they need prayer for healing. In religious settings many have heard of our family’s journeys where the elders, long timers, and money givers feel it is their right to make an issue of the “different”, not understanding truly what an imageo dei is an how a diverse mosaic our Holy truly is in human form… yet it is left to us to take the slings and arrows, and to make apologies, up to us to mea culpa, and share the medical history to “educate”. Yet at no point does someone hold the bullier accountable, and threaten to cast them out, instead the surface issues are touched upon, and one does not want to deep dive to the “isms” below the surface. Truly live healing and reconciliation at a community level as the gospel teaches, so instead we leave. Before the social distancing began I was sharing ideas with some non-profits to offer up this spiritual space for families seeking it an not yet ready to traverse the choppy waters. Also knowing that the last 2 places my family has been and is, are safe zones, some may say courageously, but rather I would use the term they came to meet my son with Jesus’ heart.

But I digress. For the fight before these moments was cemented in something deeper. As alluded to. You fight against the passive systematic eugenics for your child to be allowed life. Then you battle the assertive systematic eugenics for them to keep their life. You lift the life up to the Holy Mystery thankful for the love and blessing of parenthood for however long they will be with you, knowing that it truly is a blessing.

Yet as noted, different groups you try to be apart of use “tradition” or “money” as reasons they cannot alter physical spaces for accessibility (making a physical space able to be used by all). Never mind if they are willing to even extend the interpersonal space to allow the different to exist (noting any similarities with any other marginalized group). To the challenge of belonging- this is being known by many, missed when not their, supported in finding and fulfilling purpose– it challenges the concept of the abled, the idea that disability is catching, or that the wrong thing may be said, or what do you do when the child dies? So many things race through minds to create barriers, instead of simply meeting the person before you as… a person.

The other challenge is fighting with other systems that tell you, like the CBE, that you chose to have it, and should be happy with the scraps thrown your way. Our current education minister that believes scrapping aides is a cost saver for the rest of the school year that will be done by home, not understanding the roles fulfilled. The governmental policy not seeing the child as a full person, just as a nuisance that can be spun as the rationale for why other students can’t have things (and yes has been done many times). When tragedy strikes, knowing your child will not receive the same level of support as other children would, because it is too costly to figure out how to aid them in grieving.

To a disability community fractured because everyone chases the funding needed for our children to excel, so instead of exceptional kids and adults, we hear about specific disabilities, and others are left outside. Sadly, as I noted earlier, some families’ take this approach in trying to support one another in the idea of-well your child can– so you don’t get it (or in the struggles to keep plastic straws). A selfish inability to see beyond our own situation, and to understand that we can advocate for something beneficial to other families’ even if it is not directly beneficial to our child because it’s the right thing to do.

The system, politics,  communities, religion, try to beat down upon you that your child or loved one is not a full person. That you should mourn because they may never (fill in the `traditional’ coming of age mile stone) and as such you are missing out.

And ya know what my pastoral response is to it all?

BULLOCKS!!!

Being a parent, uncle, aunt, grandparent, god parent, is a pretty awesome thing. The child before you, that is now in your life regardless of diagnosis or labels is– a friggin’ blessing folks and is looking to us to love them, mentor them, and support them into becoming the most awesome them they can be.

What does that mean? It means celebrating when things happen that are awesome, crying when things change or loss happens, chatting and sharing with the child like you would any child. Doing life together as a family, and standing your ground as a strong advocate when something is unjust, or educate when necessary, but also, regardless of time affiliated with a group, person or family member, when they don’t get it and it becomes detrimental to your mental health or that of your child- END IT!

See my son is 14 years old. 14 amazing years of having a son. Some say how did you raise a son with___. Honestly, I raised a son, this is my son, and truly the only one I know how to raise.  We have had many laughs, tickles, wrestles, experiments, times in hospital, tears when little buddies and grandparents went to the tea party in heaven, his heart convinced me a non-dog person to get a dog…and we cried when our mumma house hippo joined the Jesus Tea Party. Waiting for the next blessing. He has ministered with me, cheered in hockey games, been out in multiple parades collecting donations to help other kids, the first to hug a new friend that he just met, and deeply feel rejection from those that should know better. He chose to be baptized in pre-school, we celebrated his elementary school graduation, and are looking forward to high school. Do we know what the future holds?

No.

But he’s a kid. Kids discover, learn, and define who they are in life. Parents help them cultivate that so that they can become the who they are meant to be.

That is what we are doing. We live each day with gratitude, even those days he’s a weiner because he’s a 14 year old boy and does what 14 year old boys do, and those days when he shows wisdom and compassion through the simplest actions beyond his years.

Society tells you to grieve. I thought it was important to share, that grieving is about making society feel better for their innate fear and hatred of that which does not conform to their “ideals”. The labels and diagnosis are there not to define your child’s boundaries of life, but rather to state what the world needs to do to ensure they belong, grow and thrive into the citizen they are becoming.

Rather live in celebration, push the envelope, learn, discover, laugh, cry, and be the parent you were meant to be with the kids you have.

Shift from grieving to gratitude.

Practice each day, writing out 3 things you are grateful for. Plan your own family milestone celebrations that fit the family you are and are becoming due to who your child is.

Be in the moment. Let hope grow, and love abound.


With Individual rights, come corporate responsibilities of belonging.

Holy Freedoms& Holy Responsibilities Video.

Lord, our Lord,
    how majestic is your name in all the earth!
You have set your glory above the heavens.
    Out of the mouth of babies and infants,
you have established strength because of your foes,
    to still the enemy and the avenger.

When I look at your heavens, the work of your fingers,
    the moon and the stars, which you have set in place,
what is man that you are mindful of him,
    and the son of man that you care for him?

Yet you have made him a little lower than the heavenly beings[b]
    and crowned him with glory and honor.
You have given him dominion over the works of your hands;
    you have put all things under his feet,
all sheep and oxen,
    and also the beasts of the field,
the birds of the heavens, and the fish of the sea,
    whatever passes along the paths of the seas.

Lord, our Lord,
    how majestic is your name in all the earth!

-Psalm 8, English Standard Version

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One of the greatest lies we tell ourselves is that normal is a universal precept. It is not. Each and every one of us is normal for our journey of life. We each have experiences, positive and negative, glorious and disastrous, and sometimes awesome or monstrous…yet that is normal for our life journey.

Be perfect therefore as your heavenly Father is perfect.

-Matthew 5:28

bookAs Martella-Whitsett aptly points out in her 2011 How to Pray without Talking to God, the word perfect in the original language is teleios, which is more aptly translated as wholeness (p.129). That is Brother Jesus is pointing out that we are already whole, living in the Divine Life is we choose to accept and live into it. Or we can accept the negative, and not realize that there is something beyond. That is continue to live within the “what ifs” or “what won’t happen” or “woe is me” narrative that becomes so much easier to exist within thus we create the false teaching within the Law of Attraction that you have brought this upon yourself (or in Biblical times, who sinned to create this condition?).

A something wrong consciousness is not a reality but a limited perception. A consciousness of separation is not a truth but a choice. Consciousness is pivotal.

(Martella-Whitsett p. 135)

Image may contain: textConsciousness is what we do with challenges and successes. It is not advocating for the slippery slope in some fundamentalist healing sects/meta-physics that our minds can cure everything or Spirit/God can by using the right incantation of words of “Truth”.

It is standing in your wholeness. Some would call it the image bearer of the divine, others in unity with the divine. Yet that is wholeness, affirming that spark of divinity that is within you, and you are just as you are meant to be.

This has been an important re-affirmation for my family. We have found sometimes within the disabilities community families can be so wrapped in grief for loss of what they believe normal is… they do not experience the beauty, wonder and wholeness that is with them or is them.

Or in Martella-Whitsett’s words (p.137):

Healing is the activity of recovery, repair and restoration, correcting a consciousness that had veered away from wholeness. In other words, we heal ourselves by cultivating a consciousness of wholeness.

How do you do that?

Martella-Whitsett outlines a practice that is all too familiar. Words may change, but the practice/disciplines are essentially the same. Sacred reading. Time in communion (prayer/meditation); Self-examin (affirmation/denial); community of spirituality; and journalling (words or images)…

Because it is in the moments of pausing from the busyness and noise of life that we can draw deeper into the Holy Mystery. We resonate with the Holy Breath that was breathed into us at creation, and the star dust within activates.

Or as bluntly as the reverend puts it in her book (p. 137):

God does not heal! God is wholeness.

And we re-encounter and renew that wholeness by time spent.

What is your steps into wholeness this week?


Celtic spirituality speaks of their being 300 feet between physical life and spiritual life, that there is a thin space between where they can intersect. This is where love/belonging truly happens. Within the Belonging Pyramid, this is the heart that supports the inverted pyramid shape- Agape.

The thin liminal space. Are we ready to exist there as communities? I will take you through an exercise of Orthodox theology (those who like Tolstoy and Dostoevsky, or are familiar with the marriage equality discussion documents from the Orthodox to the Anglican Communion, they were written to the Roman Catholics). It becomes a parabolic discourse to a third party so the other can look in.

For the Canadian Church (and communities) this can be the Trump-Southern Baptist conversation (great article here ). Where even Pastor Crum began resonating within the Thin Space, and knew something needed to be said, yet as many, Not time yet.

It is the same argument within dying congregations around the belonging pyramid and drive not to be open as it was with these dying congregations of the Southern Baptist convention that rallied around Trump. Creating the closed huddle, allowed for a theology of survival and rallying to something.

If we cannot afford a pastor, and our fear is the cost to retro-fit the building to be accessible for all members, renters and welcome to the community, then perhaps we should give up the building and partner with a community centre so we can ensure at the least accessibility and inclusion.

-Me, as an associate pastor at a congregation meeting, tenure did not last

The song of survival is often heard. It is a common one. Regardless of how much money is coming in, there is never enough, nothing can change, must maintain donations or we will not survive. There is always another project that crops up to fundraise for that takes over any (if there even was) thought for basic accessibility. See churches get away with even the top portion of the pyramid for the simple fact their buildings fly under the radar the most. They come up to the letter of accessibility code when renovations are undertaken but rarely will go beyond because of “cost” they say.

What is hidden in that statement at the accessibility level is: your need (not want, NEED) does not override our privilege to preserve our bottom line.

Like the pastor in the article struggling with delivering a true message knowing it would cost, the church does not want to hear the truth of those in their congregation. This is not just about persons with disabilities– oh wait it is. For elders, youth, okay across the lifespan are using mobility devices and need accessibility.

Yet, we may make noises at national levels, but trickle down to the congregational and very little change happens. Due to one fact, tradition of reading. The Bible stories are all read as very black and white. Jesus healed the (insert descriptor of differently-abled here) and then they were included in the community. Full stop, medical model, something is wrong with the person so it is okay, because they must earn belonging, inclusion, even prove the case for accessibility beyond an archaic ramp at a side with a door not even grown to allow ease of entry.

I fall back to John 9:1-12 a lot, because it is so clear on this issue in showing the pyramid:

Verse 1 identifies the “disability” (blind). Which is what accessibility is about. What is wrong, how do we remove some barriers.

Verse 2 identifies the question- what is wrong with them? (Inclusion) it is trying to understand how to keep someone out. Yes, inclusion has become that kind of word in our 21st century. What are grounds for exclusion? How can we look like we have drawn the circle wider, but in fact are strategically shrinking it so the bottom line, old guards belief system is not challenge. This is the type of question that allowed the person to be “included” in the wider community as a beggar, seen as a burden, and allowed to hear teachings, but not fully participate within Temple life.

Verse 3 is about belonging. Jesus gobsmacks his followers and the people. The glory of God. That is belonging. The cosmic dust, life spark within each of us. The spirit that connects us with everything and everything with us within the Holy (that really is a puzzle created through and with the Thin Space tapestry of all creation). That is right, Jesus is showing that part of that tapestry is diversity within all its forms (other times he showed it through acts of kindness to Samaritans (traitors); and Romans (occupiers)).

Ahh but then the challenge for the listener where this might resonate. For Jesus does do a healing. This collapses the theory one would say.

NO!

It strengthens the theory. Look at the journey/ritual this man went through. Publicly to show the whole community that there was no turning him away any more. It was not only about vague inclusion. Jesus realized people could not understand belonging and agape. He short circuited it, much like his own transfiguration story. Jesus gave this man a ritual of transfiguration to reveal the living cosmic dust within to all.

Love illuminated.

2,000 years on (in some cases over 4,000 years) from the stories within the Hebrew Bible and the Christian Testament. Meaning and understanding has shifted and changed throughout time EXCEPT for those around healing. Why? Simple, we do not want to understand what is a disease and how someone is specifically created. Anything that is outside what we want to see as “typical” we want to demonize.

I can’t wait until I am in heaven with your son so I can hear him speak and see him run and dance. -“Well meaning” congregant.

That needs to end. At the current General Council 43 of the United Church of Canada there is a gent with disabilities up for moderator. I would love to see him elected. Yet I know the church is not ready for it. It would cause each and every congregation to confront authentic accessibility, inclusion, and belonging sourced through agape and not lip service. Much like a small Southern Baptist congregation of Trump supporters in their pews on a warm Sunday morning as the pastor opens to preach about the 7th Commandment (thou shalt not commit adultery) and backs down because they are not ready yet for the full implications of faith.

So is spiritual life that does not see the beauty in the diversity. The belonging of the person in full person-hood, or as Brother Jesus said, “Glory of God”.

It is trite, but it is true. We are all created in love just the way we are.

But are we ready to hear the full implications of our beliefs?

Are we willing to step out of the physical, and into the Thin Space of resonance?

To live, unreservedly out of love for OUR NEIGHBOUR?

 


Why can’t there be a big red button?

-War Doctor

           Like any good science fiction questions around the essence of us (humanity) should be brought forward. This is at the bedrock of the Doctor Who 50th anniversary movie (watch trailer here), Day of the Doctor.  It is the deepest plunging into the hardest thing to  comprehend for any person… ourselves.

As the regeneration who chose themselves undeserving of the name, but asks the question as in the clips above, the Warrior Doctor, “I am looking for the Doctor.” The one who is called to heal, to help to aid…or as Clara will note the thrum of the Tardis is a sound of hope. But this is about that corner of the mind of the Doctor, no, the heart where hope has gone out.

For it was in the 9th regeneration that the fabled time war happened. When Daleks and Time Lords went to war to end all wars. Where the rest of the universes saw the Time Lords just as evil as the Daleks who view anything outside their race as need to be exterminated, which this mini-episode Night of the Doctor expertly portrays as the Doctor must make a choice to not be apart of the war or to be apart of the solution?

The haunting begins.

Much like we make choices within our own lives at any given moment with the information available. Whether it is good, bad, horrible or indifferent. It is what is possible and probably for us at that moment. Much like moments in human history (very hard to bring 21st century morals onto situation 400 years old or 150 years old as we try to erase instead of critically teach history so the cycle can be fully broken. Just ask any abuse survivor, the story and triumph need to be spoken so that it will not be repeated, in all its darkness).

This literally becomes the story. As the device designed to end the Time War by the Doctor is AI with a conscience and brings the Doctor to begin interacting with his decision. The decision? At that moment and time in war as the Daleks are all gathered at Gallifrey—to end it all, Daleks and his people. The haunting ripples this will bring through time.

The decision driven by the motto burned into a wall by him “No More.” The war must end.

The journey forward form that choice showing the grief cycle. The short regeneration shortly after not even there. The true shock.

But the struggle between who are known as the Tenth (David Tenant) and Eleventh (Matt Smith) Doctor’s to forget this period in time. How it shapers personality. One who lives in pained regret and the other who lives to forget, to move forward.

The haunting question answered by 2.41 billion.

But with the Eleventh Doctor being 400 years out…is there another decision that can be seen?

What if that decision can be tried?

What if in your moment of darkness your future selves could stand with you and you would not have to be alone?

What if, you live in acceptance of the choice and find hope in spite of it to move forward in a better life for yourself and others?

This may seem like nothing more than a toss away sci-fi movie from the BBC. Apart of geek culture and nothing more.

Yet we live in a time of reconciliation.

A time when groups who have been oppressed and the former oppressors know that something needs to change.

But how do we get there?

Sometimes a science fiction story can show us the interior and exterior journey in a way that creates conversations that can create the space for critical discussion and active listening, that other venues cannot.

Just think of using this in a religious or political or classroom setting with the Time War as the metaphor for residential schools, Canadian Eugenic practices for those with disabilities, the destructive LGBTTQ2+ laws; the dying with dignity or abortion laws; slavery, the list can go on…

For what questions would haunt our journey where the answer 2.41 billion could just be as haunting.

But even more so.

What is the new life?

What is the regeneration that awaits each one of us?

Where does hope exist?

Do you hear the thrum of the TARDIS? Or are you blocking it out?


It is so weird when we speak of inclusion that there are still the “stigmatized” out there. I remember years ago when I first entered my mental health journey being told, “don’t say anything” or “others will see you as weak if they know” or “leaders don’t speak of their weaknesses.”

Weakness?

That is the wrong term to be used in regards to depression/anxiety, or even disabilities. All misnomers. Our world is made up of many different types of people, who have different abilities, and also mentally/spiritually experience the world differently. By moving towards exclusionary terminology, labels or even worse degradation to less than they are capable of being. For it is in building a world, where each person can excel to their fullest potential that is needed, not one where we place our own ideal of what is “normal” or “civilized” or “healthy” onto everyone else. For it is in trying to bring others up to our desired level that isolation, aloneness and seperatedness from community happens to the point where I believe it creates a huge contributing factor to the rise of addictions of every shape, for it is easier to allow something to overtake your life to the point of not being in touch with the reality around you, than to be a constant disappointment to the reality around you.

Think about it?

Are you willing to provide support for individuals to become full partiicpating members of community in a healthy way?

Are you willing to look beyong labels to who they truly are as a divine being?

Is the community you are a part of willing to open their arms in a welcoming fashion regardless of cultural/societal label and create a courageous and safe space for all?

Hmmm… or are the words of inclusion empty platitudes to make us feel better while we do not need to transform ourselves or our world for the better?

What is inclusion for you?

What does it take to shine the light into the Dark Nights? And allow the rainbows through the bleakness of day?

How much does it cost for everyone to find a true Home?