The spirituality of disabilities where everyone is whole
An ordained Unity minister, I have practiced law and worked in clinical science. Throughout my careers, I have advocated for a level playing field for all, working for respect and civil rights for those with disabilities and other marginalized people.
As we turn the calendar page, we focus on new beginnings. As we practice writing a new year, we imagine the new skills we will gain. We write goals as if there is a magic in the new year that will propel us past all the things that got in the way of reaching previous goals. We affirm that this year the elusive something will be added and we will find fulfillment. We affirm that this year, the persistent appearance of those things we do not desire will lessen and we will find fulfillment. As I pondered what the elusive something might be and what the persistent annoyances are, I discovered that everything challenges us.
Joy calls us to lean fully into the experience without the reservation of fear that joy is limited and irreplaceable. We are tentative in joy, exhausting its fleeting time, and then lamenting its absence. Joy calls us to dig deeper to discover the joy that comes from within and is not dependent on the temporary nature of the outer world. Joy calls us to embrace the life we have.
Sorrow, which we would rather avoid or dismiss, calls us to resist narrowing our focus to only that which we have lost. Sorrow beckons us to reflect on all that we have enjoyed, find gratitude in this moment for all that remains and expand our awareness into the fertile fields abundantly seeded with possibilities yet to be revealed.
Love calls us to recognize it as our true nature, the essence of our being rather than something added to us from outside. Love illuminates our wholeness and our integration into the wholeness the universe embodies. Love dissolves the barriers and allows us to see we are not broken, waiting for some missing piece to bring us completion. Love declares we are wholeness, not as a couple or a tribe but as an element of the All- ness we name God or Allah or the Divine.
Hate, the human distortion of our divine nature, calls us to examine what fuels our belief in separation. Whether we point to politics or religion or nationalism or simply fear of otherness, hatred is a creation of our humanity. As we sift through all the elements of our hatred, we may ultimately uncover the evidence of our divine unity deep within our human experience.
Justice, that virtuous right outcome we seek, calls us to discern the lens of our rightness. What shapes our perception of what is right and what is wrong in any situation? Justice calls us to dismantle the constructs of our tree of knowledge, the duality of right and wrong, and imagine what will be most beneficial to each one. Justice invites us to see it as a correction only necessary in our human floundering out of alignment with our best self and calls us to endeavor to live more fully centered in our best self.
Injustice calls us to act in ways that support the dignity, the worthiness and the divine essence of each one. Injustice is evidence we, as a community, have allowed our humanity to stray from its divine foundation and we are called, not only to find our way back to our divinity, but to act as examples for those still lost and wandering. Injustice is a temporary condition in the material world and we are called not to see it as diminishing the value of individuals nor as a permanent condition beyond our control to redirect.
However the events of 2022 challenge us, may we respond in ways that bless our lives and the lives of others. May each challenge strengthen our faith and renew our resolve to not tire of doing good. May we find wonder in the ordinary and splendor in the silence. Let us create a 2022 which honors the ancestors, gives us joy in the present moment, and expands our vision for what comes next.
Joy should be simple—it’s my name. It is a word tossed around quite a bit at Christmas. The angels appearing to the shepherds sought to calm them by saying, “Do not be afraid; for see—I am bringing you good news of great joy for all the people”. For many of us, joy is what we seek in the outer world. We find it in the birth of the baby or the news someone brings to us. I believe joy, like all the advent gifts, resides within us. Yet, as one of my favorite theologians, Henri Nouwen, says, “Joy does not simply happen to us. We have to choose joy and keep choosing it every day.”
Choice is another one of those spiritual gifts. We can choose where we place our faith. We can choose peace or struggle. We can choose love or anger. We can choose joy or all the things that feel like the absence of joy. In loss we may feel like all that gave us joy is gone. Yet just as love comes from within us, and we pour it out upon ourselves and others, joy wells up from within us when we allow it to and acknowledge it. In times of great loss, acknowledging joy may feel like a betrayal of the one we’ve lost. For me, I have come to understand it doesn’t work like that. None of the love is lost, even if the one I loved is out of reach. I keep loving because it is my nature to love, forced to find new avenues for the flow. Joy does not require perfection, or the absence of sorrow, or the worldly measures of success. I keep choosing joy because it remains an eternal reminder of Spirit in me and in the world. I choose joy when I smile; when I smell the winter evergreen; when the snow falls silently to cover every blemish; when the cardinal perches on the feeder like a scarlet kiss from heaven.
Advent gifts are celebrated on Sundays and because of the rhythm of weekdays and the 25th, sometimes we celebrate joy for a day and sometimes we celebrate for 6 days. This year we have a week to celebrate choosing joy. Choose joy. Do not let it escape your attention amid the parties and shopping; amid the sadness and loss; amid the expectations and disappointments. Open your heart to the joy that is there, waiting for you to claim it.
While Love may be the most familiar of the Advent concepts, it is also one that we complicate with layers of humanity and ego. In its purest, love is the very essence of who we are. It is the unifying and creative force in the Universe. We usually see love shrouded in our personal history and experience. We feel wounded by love as much as we feel healed by love. Actually, the wounding we might identify is our human response to the actions of other humans, not related to the pure essence of love at all.
Perhaps the original story of the visit of the Magi bearing gifts has contributed to the complication of the celebration of love and Christ’s birth. We measure both the love we give and the love we receive in gifts. We allow large and small, fancy and simple, time and companionship experiences, and yet, we keep ending up measuring love with gifts. A favorite Motown Christmas song implores us to “Give Love on Christmas Day.” We acknowledge that the heart of every gift is love and I just wonder what love looks like beyond the gifts.
This year I want to suggest we Be Love, not only at Christmas but all through the year. When we are being love, we are not only compassionate but also generous with others and with ourselves. I’m not sure how being love looks to you but I invite us all to explore the experience for ourselves. Amid the busy shopping, wrapping and cooking, take time to breathe and be the love that is Christ born anew in us each day.
“Glory to God in the highest heaven, and on earth peace…” This message from the angels in the gospel of Luke focuses us on perhaps the most elusive of all the elements celebrated in Advent. We have glimpses of hope, faith, love and joy but how much do we experience peace? Hanukkah is a celebration of light over darkness, and yet another battle for the Hebrew people who continue to feel the stress of conflict in the world even today. The famous tale of Silent Night and the pause in World War I portrays how fleeting peace can be on earth. Yet here it is, the Advent Sunday and week of peace. What are we to make of it? How can it inform our preparation for the holy birth?
If peace is, at its simplest, the absence of conflict, what if we turned our attention inward? There is no conflict in the spiritual realm (or heaven), so this is an issue for our human experience here on earth. What if our first order of business is not so much the conflict we create among ourselves but the conflict we create within ourselves?
Created in the image and likeness of our creator, then our essential nature is love. How much time do we spend centered in, and thinking, feeling and acting from our love nature? The most basic conflict consuming much of our time here on earth is functioning out of alignment with our true self. I want to be love in expression and I cannot feel peace when I am thinking, feeling and acting out of anger, fear, guilt, worthlessness and pain. Peace calls me back to my essential self of love. When I accept my own struggle to be love in expression and am able to see the struggle of others, I let go of anger and know that I have nothing to fear from others. When I forgive myself for times I have been less than my best, I let go of guilt, even as I seek to make things right with others. When I know myself as the creation of the Divine, I realize I am precious to the creator and my worth has nothing to do with the measures of earth. There is no greater nor lesser in the Creator’s expression. I let go of condemnation of myself. When I am in pain, physical or emotional, I know it is a temporary experience that is not my essential nature. I let go of any sense that I deserve or need to hold onto the pain.
The more I can experience peace within, the less I perceive myself in conflict with others. The more I can acknowledge the unifying nature of love, the more I seek to find a path to understanding the struggles of others and solutions that create a world that works for everyone. As there is more peace within my earthly experience, I begin to see more peace out in my worldly experience. Peace is always one of the infinite possibilities available in each moment. Today I choose peace. I claim peace on earth.
The beginning of Advent is often designated Hope and Unity prefers Faith. It may be a matter of degrees but here is an analogy that might be helpful. Hope is the opening and Faith is the power to walk through, push through the opening. And sometimes we have to “walk by faith, not by sight” (2 Corinthians 5:7) even when we do not see the opening. Openings and Hope are what “representation” is in the media. Let me explain.
Back in the 80’s, single parent adoptions weren’t popular or well known. Single, disabled parent international adoptions were something I hadn’t seen. But I did it anyway. For eighteen months I waded through paperwork, navigated delays and unexpected obstacles and lots of prayer work to bring my son Victor home from India. It was a long journey with lots of opportunities to exercise my faith that if this was my child, as I believed he was, Spirit would make a way for him to come home. I shared my journey to give Hope to others; to let others see an opening they might be guided to walk through. I even have an article from an Indian newspaper documenting “a disabled American woman adopting a boy from India with the same disability”. Maybe that provided hope in another country.
Sharing this time with Hanukkah, we are reminded of how unlikely it would seem that the small amount of oil would last for eight days. Or how impossible it would seem that a small band of Maccabees could overcome a vast army. These are metaphors for the ways that Faith keeps us centered in the infinite supply that comes from Divine Source and the strength, wisdom and guidance that dwells within us all, even when it seems the world is against us.
Everyone needs hope. With more representation of diverse, disabled people achieving success, sometimes in the most ordinary ways others take for granted, we create hope. We long to see openings for our dreams. May each of us find hope this season of Advent and then exercise our faith in an unseen power to move us in the direction of our dreams. The power is within us. Claim it!
A few months after my infant daughter Sarah died, I purchased a blank journal and starting taking notes. The notes were ways that Sarah continued to appear in my life: the angel-wing begonia cutting bursting into bloom in January; the pink balloon drifting across the sky at the cemetery; the adoption pictures I was beginning to look at. There was a healing in writing the notes but there was more healing in the expectancy of purchasing a blank journal and knowing there would be experiences to put on the pages. Faith seems to be a more active form of expectancy than hope. If hope is the blank journal, then faith is the purchase, keeping a pen handy, staying alert for the good unfolding and committing to writing it down.
This year’s advent season also begins Hanukkah, the Jewish festival of light and faith, when good triumphs over evil and hope stands strong in the face of fear. We’ve been through some interesting times the last couple years and it is easy to focus on loss and darkness. Yet faith encourages us to be the light whenever possible and expect to see the light in the darkness. As the late Thomas Kadel admonishes us in the title to his ministry book, we must “Keep The Book Open.” Look with expectancy at the blank page of each day and commit to seeing and noting the good as much as you commit to being the good others see. It is the light of Radical Wholeness within each of us that is seeking expression.
This advent will be the first season of freedom in 43 years for Kevin Strickland. While the state of Missouri declines to give him compensation to begin after 43 years of wrongful conviction, the Midwest Innocence Project started a GoFundMe page and raised $1.5 Million.
While a menorah was first placed across from the White House in 1979, this will be the first Hanukkah celebrated by the family at the Vice-President’s house. Residing there is the first female, Black and Asian Indian Vice-President.
Vaccinations are available and we have the potential to limit the spread of COVID and all its variants. People are traveling again and with vaccinations, people are gathering in homes and embracing loved ones. We have missed the hugs of connection.
Let this season of light illuminate the darkness with the beams of each smile, each kindness, and each connection and may the path be revealed for each step forward in faith.
I’ve been wrestling with my feelings for days and I’m not sure I’m any closer to sorting the feelings out or finding words to express myself.
We are spiritual beings having a human experience. The oneness of our spirituality is often poorly expressed through our humanity and so issues like justice, oppression and inequities often occupy our thoughts. I, like others, have spent a fair amount of time discovering and living into my inner, spiritual wholeness. Embracing the idea that no matter how my humanity appears; no matter how the material world reacts to, judges or discounts my humanity; there is within me an eternal wholeness that cannot be diminished or destroyed.
Do you love yourself? This soulful question is hard enough for people who generally fit the ideal mold held out as leading to success in our world. Most people question their body shape, hair texture, speech, and a hundred other factors and fear they still don’t measure up. For people with disabilities (and other oppressed groups), this is an even more difficult question to answer in the face of ample evidence the world does not love me, value me nor support me being the way I am.
While I have been focused on my wholeness, it seems the material world has been focused on fixing a brokenness. Last week, the FDA, not wholly consumed with COVID, approved a BioMarin drug to treat achondroplasia, the most common type of dwarfism. Intended to enhance growth in a condition noted for short stature, it may not be the panacea you hope it is at first glance. While it may increase height, individuals will not be tall, nor will it erase features seen in the hands, face, body proportions and feet of individuals with achondroplasia. It may allow them to reach things but it may not put the treated individuals out of the reach of ridicule for how they look. There does not seem to be sufficient longitudinal evidence (either here or in Europe) to see if it will really improve long term joint pain and co-morbidities (including apnea). BioMarin’s Chief Commercial Officer projects sales of this drug will eclipse its former best seller, at $544 Million. Given an annual cost of $320,000 and the inequities inherent in our healthcare system, we know there will be disparities in how the drug is dispensed based on race and economics. BioMarin sought input on the drug, primarily from unaffected parents of children with achondroplasia. This sets up a potential dynamic similar to what happened years ago with cochlear implants in the deaf community. Deaf parents were suddenly “neglectful” or “selfish” if they saw deafness as an identity, a life worth living and declined to subject their children to the implant. Dwarf parents may now face a similar discussion if they see themselves as whole even with achondroplasia and decline the drug for their eligible children.
Of course, there are people who don’t want to be the way they are. People who don’t want to be dwarf, or deaf, or gay, or transgender or neurodivergent or different. “It would be nice to be like others,” they fantasize. “It would be nice to be out of pain and suffering. To live without fear in a world that supports who I am.” I am concerned that if we keep working to “fix” people based on the standards of oppression, we skip the work we could be doing to improve quality of life, eliminate barriers and oppressive social structures, and move to a place in consciousness of embracing all differences.
This drug is given around the age of 5-12 to children with active growth plates so decisions are driven by parents. The challenge is always unaffected parents choosing an identity or understanding an identity not their own. These children have a spiritual wholeness within them, no matter what their parents decide. Should drugs be used to eliminate elements of difference, elements of human identity that others devalue? Is the primary goal health or fitting in? What happens to the way society views those with dwarfism who aren’t helped by this drug or who can’t access the drug? Can we believe in wholeness and still seek to alter who we are? I affirmed my wholeness daily during chemotherapy. Healing, for me is what happens when I am grounded in wholeness. I guess I didn’t view my treatment with drugs as fixing something broken as much as I saw it as releasing something foreign. And maybe that is just semantics I want to promote my view. I do believe in our wholeness, we are continually seeking to be better and better human expressions of the Light we are. I will work to release judgement of those who choose the drug for their children. I will work to release judgement of those who long to be different than they are. I can’t claim any superiority around the wholeness I see within each of us. Nor do I deny that it is possible for those choosing the drug to also see wholeness and not brokenness.
Still, I wonder about what happens when we set about eliminating differences in each other—in our humanity. BioMarin has decided tall(er) is a better quality than short. We know that eugenics, as a movement even in this country, sought to eliminate any “imperfection” early on by allowing infants to die without life sustaining treatment. I was put in the back of the nursery to die in 1955 by concerned medical professionals, and Baby Doe cases in the early 80’s allowed parents and medical teams to withhold treatment until legislation protecting the rights of newborns was enacted. We also allowed involuntarily sterilizing primarily developmentally delayed adults (some states allowed this up until 1977). The medical community was a part of how this all unfolded. I was in my early twenties the first time a high school biology teacher confronted me in a workshop I was doing with a genetic counselor. The workshop was about teaching the science of genetic inheritance in humans with compassion and not viewing “conditions” as oddities. We hoped to avoid people teaching in a way that made affected individuals in the text book somehow less than human. This gentleman said, “It makes little sense to discuss how the condition might be inherited going forward when people like you shouldn’t be allowed to reproduce.” Well, there it was, out in the open. Our target audience was resistant to the message. I think I simply said no one needed a permit to have children. I’m sure I had a sarcastic ending in my head about maybe not allowing narrow-minded people to reproduce. I wonder if we have changed?
I am certainly not “anti-medicine”. I am vaccinated and booster-ed. I go to the doctor for support in the ways I can maintain this little body temple. I listen to my body. I am still thriving after years of activity and a dance with cancer. I pray everyone has access to the tools of technology and medicine which allow them to live their best lives. I do not believe my activity, my productivity, the taxes I pay, the children I had the honor to raise, nor the education I got, makes me any more valuable or better than anyone else. As this Thanksgiving approaches, I am grateful for the ability to love myself; to see the wholeness I am; to see wholeness in others; and to continue to work for an equitable and just world for all. If enough people see wholeness and equality in everyone, maybe we can redirect our creative energies in a direction to provide healthcare, education, housing, transportation, meaningful work and basic needs for all of us just as we are.
Reflections on Diversity: Awareness
October is a month of so many “Awareness” campaigns it can be overwhelming. So many of them are directly relevant to my life and touch those I love. It may be just an alignment of synchronicity: Dwarfism, Disability Employment, Infant Loss, SIDS (Sudden Infant Death Syndrome), Cerebral Palsy, Domestic Violence and more.
In pondering this “awareness” work, I began to wonder what was the point? What is it we hope to accomplish by providing all this information? In all the years of posting, has it made a difference? Is there ever enough information to shift the consciousness that is the source of painful experiences?
We hope that by answering questions and providing information others will finally understand a perspective they may not have experienced. In that understanding, we hope to find acceptance and support for the ongoing challenges of the particular awareness issue we address. In acceptance we hope to gain equity and not only a place but a voice at a table of privilege we may not sit at now. Perhaps we could all begin with knowing we cannot ever understand at a deep level the experiences that are not ours. Not having the same experience as others does not stop us from treating others with empathy and compassion. Make the choice to be kind, it won’t matter how many questions go unanswered. Maybe in deeper connections we actually will learn about one another in a more meaningful way.
In awareness work, I think we hope to make our difference a little less foreign. We try to point towards common ground in our humanity and try to reduce the distancing that happens among us all. We hope that answering questions will somehow quell the fear of difference. Perhaps we could begin celebrating our uniqueness. Difference does not mean “not the same as ____” where we value a characteristic and those without the characteristic are “different”. We are designed to be unique, no two exactly the same. We are all different. Breathe. Be unique and let others be uniquely who they are.
Peace within produces peace without. We are really all afraid of being judged. Awareness campaigns arise out of awareness of the ways people judge us. As much as others judge us, we internalize all that propaganda and we judge ourselves with the same criteria we fear having applied to us. It is the social order, economic hierarchy, biased “isms” we have all been taught. We internalize it and judge ourselves. Love yourself. The funny part of much of the education in awareness campaigns is we attempt to teach that which we have had to learn ourselves about ourselves and those we love. Everyone has something that is their “different”. We all know the rules about success and worth. Toss them out. Find success and worth within yourself and begin to be able to acknowledge it in others.
Today, we had planned a perfect day. Weather predictions were low humidity, a nice breeze and mild temperatures. We would start the day with a lazy breakfast in a local café. Then we would wander the sunflower fields outside Lawrence, take some pictures, and wander back home. Maybe a stop at Sonic for a cherry limeade on the way home. Books to read on the patio at home.
Then came the note last night. Bug sprayers and smoke detector checks today. Random folks invading our apartment. We stayed home to protect the fur babies. There is no schedule and we waited. The morning evaporated without a lazy café breakfast or start for the sunflower fields. When the buggers finally came and went, we opted for a drive through lunch carried to the park with Raymond in tow as a precaution for the still unexpected smoke detector checker. We had to thread our way out of the complex through the asphalt trucks that have abandoned the carefully mapped project as the paved lots slowly transition to some new black top bliss. The breeze at Shawnee Mission Park lake was delightful. Geese honked and swam at a safe distance although Raymond noted their presence with barking. He sniffed and rambled and got bites of hamburger. I came home to work on various diversity projects. It was a different kind of perfect than we had planned. Still perfect.
We have to stop expecting there is only one kind of perfect. Charlie, my luecent feathered cardinal, is a different kind of perfect. My father held me and declared me perfect and not in need of healing. I am a different kind of perfect than I’m sure he and my mom planned on but still, just perfect. In our diversity work, we must come to see all the different kinds of perfect there are without wanting to change or heal any of them. Perfect isn’t a peg shaped to fit in a hole, but a sea of infinite possibilities manifesting one by one, each uniquely shaped to fill its space in the world we are creating together.
When I first had a backyard bird feeder, years ago, I found blue jays honestly quite annoying. They were big birds and often spilled seed on the ground in their attempt to balance on the feeder. They displaced the smaller birds. They were loud and their call strident. The quiet chirps of chickadees and finches were lost in the cacophony of jays.
The tiny cup of seeds I can now maintain on my apartment patio doesn’t accommodate as many birds. Recently, I find the crew mainly softly dull, brown sparrows. By sheer numbers, they bully my cardinals. The chickadees and finches have been dissuaded from approaching the crowded cup. I find that I am excited if a blue jay lands in the pine tree next to the car out front or I hear one down at the mail boxes. The bright blue color and strident call is a promise of something new on the patio.
I am learning to appreciate that embracing diversity means not only welcoming an array of colors but also voices. We need the soft and harmonious and the loud and strident. We learn from each. The Creator designed infinite variety for a reason and for me, did not distinguish one superior to the other. Whether race or ability or gender identity or sexual orientation: the beauty of diversity is all our differences, not just the differences we like the best or are most comfortable with.
Image description: a bright blue bird on a yellowish branch. A dark eye stands out against white feathers and a tuft of blue feathers tops the head. Black and white markings appear on tail and wing feathers.