Our church is in the middle of a big evangelism push. Every now and then we evangelicals get worked up and reinvigorated to tell the world God’s story. These occasions can make us brave. They can also make us obnoxious. It’s a toss-up, really.
As I’ve been thinking about my own struggle to break the ice and share the Gospel with people, I’m reminded how much I need to hear the Gospel. We’re not supposed to speak just to hear ourselves talk. But the truth is, even as a person who has been following Christ for years, I need to be reminded. As the hymn says, “I love to tell the story. ‘Twill be my theme in glory.”
Jesus proclaimed this story Himself in Luke 4 is this:
Jesus returned to Galilee in the power of the Spirit, and news about him spread through the whole countryside. He was teaching in their synagogues, and everyone praised him.
He went to Nazareth, where he had been brought up, and on the Sabbath day he went into the synagogue, as was his custom. He stood up to read, and the scroll of the prophet Isaiah was handed to him. Unrolling it, he found the place where it is written:
“The Spirit of the Lord is on me,
because he has anointed me
to proclaim good news to the poor.
He has sent me to proclaim freedom for the prisoners
and recovery of sight for the blind,
to set the oppressed free,
to proclaim the year of the Lord’s favor.”
Then he rolled up the scroll, gave it back to the attendant and sat down. The eyes of everyone in the synagogue were fastened on him. He began by saying to them, “Today this scripture is fulfilled in your hearing.”
The Gospel as I know tell it in my own vernacular is this: God loves us so much that He came as Jesus, taking on our form and flesh and He gave Himself over willingly to the violent powers of evil on this earth. He then raised Himself from the dead so that we might all have hope in this life, and in the life to come, that everything can be made good again. We have that promise in His Spirit who gives us the deep pleasure of His company on our journey.
This Gospel tells me Christ did the performing. I don’t have to pretend to be someone I’m not, and in letting go of those pretenses, I’m freed to be transformed into someone I’m not. Brennan Manning writes:
The Good News means we can stop lying to ourselves. The sweet sound of amazing grace saves us from the necessity of self- deception. It keeps us from denying that though Christ was victorious, the battle with lust, greed, and pride still rages within us. As a sinner who has been redeemed, I can acknowledge that I am often unloving, irritable, angry, and resentful with those closest to me. When I go to church I can leave my white hat at home and admit I have failed. God not only loves me as I am, but also knows me as I am. Because of this I don’t need to apply spiritual cosmetics to make myself presentable to Him. I can accept ownership of my poverty and powerlessness and neediness…
When I get honest, I admit I am a bundle of paradoxes. I believe and I doubt, I hope and get discouraged, I love and I hate, I feel bad about feeling good, I feel guilty about not feeling guilty. I am trusting and suspicious. I am honest and I still play games. Aristotle said I am a rational animal; I say I am an angel with an incredible capacity for beer. To live by grace means to acknowledge my whole life story, the light side and the dark. In admitting my shadow side I learn who I am and what God’s grace means. As Thomas Merton put it, “A saint is not someone who is good but who experiences the goodness of God.”
Even our fidelity is a gift, “If we but turn to God,” said St. Augustine, “that itself is a gift of God.”
This good news has saved my life. This news has given me hope when I’ve royally “boogered up” (as I say to my kids). It’s made me brave enough to, on occasion, risk my sanctimonious reputation for the sake of other people, or for His name. It’s given me the power to turn away from selfish instincts in moments of self-preservation and fear. It’s given me the courage to say “I’m sorry” and “Can I try again?” when I’m better at underlining my self-righteousness and walking away. It’s compelled me to see and know people I would have otherwise found inconvenient. It’s called me to do something with my life: to walk humbly, do justice, love mercy. This Gospel is more than a hot water bottle. For me, it is life.
As the late Rich Mullins sang in his song Creed: “I believe what I believe is what makes me what I am. I did not make it. No, it is making me.”
There are people who have radical stories of their encounters with Jesus. Many of them amaze me with the revolutions they’ve seen in their lives. I’ve seen a few myself, but mostly, it’s a unsteady walk in the same direction. Manning, again, describing his presentation of the Gospel in his book:
This book is not for the super-spiritual. It is not for muscular Christians who have made John Wayne and not Jesus their hero. It is not for academicians who would imprison Jesus in the ivory tower of exegesis. It is not for noisy, feel-good folks who manipulate Christianity into a naked appeal to emotion. It is not for hooded mystics who want magic in their religion. It is not for Alleluia Christians who live only on the mountaintop and have never visited the valley of desolation. It is not for the fearless and tearless. It is not for red-hot zealots who boast with the rich young ruler of the gospels: “All these commandments I have kept from my youth.” It is not for the complacent, hoisting over their shoulder a tote-bag of honors, diplomas and good works actually believing they have it made. It is not for legalists who would rather surrender control of their souls to rules than run the risk of living in union with Jesus….[this book] was written for the bedraggled, beat-up, and burnt-out. It is for the sorely burdened who are still shifting the heavy suitcase from one hand to the other. It is for the wobbly and weak-kneed who know they don’t have it altogether and are too proud to accept the handout of amazing grace. It is for inconsistent, unsteady disciples whose cheese is falling off their cracker. It is for poor, weak, sinful men and women with hereditary faults and limited talents. It is for earthen vessels who shuffle along on feet of clay. It is for the bent and the bruised who feel that their lives are a grave disappointment to God. It is for smart people who know they are stupid and honest disciples who admit they are scalawags.
Becoming something other than scalawags is a lifelong process. We need the God of this Gospel to save us from our own messes, to accompany and change us on the road, and we need it in that last breath to take us home. As an “evangelical,” I think we are far too stingy with this Gospel. We fuss and fidget about telling people “who don’t know Jesus” about it because we rarely tell anyone about it, much less one another.
So, if you’ve stayed with me this far, I’m inviting you to share the Gospel with me. And if you’re open, I’ll share it right back. My needs here are as big as yours. And I’m feeling pretty needy these days.
A while back, a friend of mine wrote her biography in 50 words. I felt challenged to do the same, so I spent some time with God over it. God bringing me to a new place of self-acceptance. (Oprah said that might happen in my forties, so HA! I’m early.) This is me, quoting me:
Born and born again in North Carolina. Given a loud mouth, limber mind and stiff limbs. Had a lot of book-learning. Mothering a few kids (mine and other people’s). Occasionally employed, always underpaid. Writes a little. Talks a lot. Almost halfway home.
That’s my offering. And by His grace, He makes it more than enough.
A couple of weeks ago, we adopted our foster son: the boy formerly known as Batman. He made his social media debut and we officially became a court-ordained family.
We get a lot of questions about foster parenting. It makes sense that people would be curious about the process. Several years ago, most of what I knew about foster care and adoption was based on 80’s television.
As much as I loved those stories growing up, one can’t base her life on sitcoms (though I try so hard).
Most of the questions we get are loaded with misconceptions. I’ve toyed with the idea of addressing those foster care FAQs as a blog series, but there are so many mom/parent blogs about adoption, I’ve been reluctant to get into it. So for the last few years, I’ve avoided blogging about life as a foster parent and instead sat myself down in front of adoptees and listened.
This is not easy to do. Adoptees have amazing things to say. A lot of it is hard to hear, particularly if you’re coming to the audience with a “save ALL the babieeeeees!!” attitude. It’s difficult to check that rescuer attitude when so much of the recruitment materials for foster care and adoption emphasize the number of children living in unsafe situations.
I see those numbers and I want to fix it. I want to rescue all those kids. But it doesn’t work like that. There are two primary ideas I’ve been rehearsing as a foster parent since we first went through training, and they still resonate with me now (and of course, I’m tying them to titles of Tina Turner songs because I can’t help myself).
We don’t need another hero.
As we learned in our county-based training, the process is about finding families for children, not children for families. Coming to adoption or foster care with a savior mentality opens wide the potential for all kinds of ethical problems. It also places unrealistic expectations of gratitude upon children who deserve basic human rights.
When we come to foster care or adoption looking for a kid to fit our lifestyle, we’re already placing our needs or desires ahead of the child’s. There will be times when the system, agencies entrusted with meeting the needs of the foster child, will fail the child, and we will need to be their advocates. We will need to bend our lives and our families around the needs of a hurting child, lest we continue to hurt them. This takes effort, personal sacrifice, and a community of support. Going in, you may think you have a supportive community and the right motives, but in ways that differ from other forms of parenting, your motives will be tested. Your loyalties will be tested. If you go into it looking to add a kid and stir, you’re already doing it wrong. Your family as it exists before you foster or adopt will need to be flexible and open to (sometimes intense) adjustment in service to the needs of the foster or adoptive child.
Having birthed two children before we became foster parents, I can say I’ve had many of the same doubts and fears that I had as a new birth parent. You come home from the hospital and you say, “What have I done?? Why did they just let me take this baby home?! I am incompetent to do any of this!!” I’ve had those moments as a foster/adoptive parent: “Can I do this?”
I’ve had times when I was outwardly on board with our fostering plan, vocally advocating for the birth family or for my son, but inwardly I confess I had moments where I hoped it would all fall apart so he could stay with us. I simultaneously wanted him to be reunified with his birth family, and I can say it’s possible to survive that tension while advocating for your child, or his parents, but it’s certainly not easy. There were times when the case was in limbo, when I had to fight to stay in the game because everything in me wanted to emotionally pull away from a potentially painful situation. I don’t like big swings of feeling. Okay, maybe rage is fun, but generally I’m not big on heartbreak. It’s not romantic to me. But foster and adoptive parents have all these feelings, and if you don’t have the stomach for that kind of roller coaster in service to the child, it’s probably not for you.
We’ve had to keep our focus on what our son needs at all times. We’ve had to make choices about how to balance that with the needs of our birth children and our marriage. We’ve done it wrong a lot. And though there are lots of families in our community and our church serving children in this way, because there is so much mystery and misconception around it, it can feel like a lonely vocation. People in your periphery will look at you like you’re a hero, but you’re not, you’re a willing parent. Because you’re a person with ego and not in fact, the Savior of humanity, you will have to remind yourself of that from time to time.
What’s love got to do with it?
Here’s a factual statement I read years ago that, at the time, everything in me rebelled against: Love isn’t enough.
Adoption is amazing. But it’s not the only way. In some situations, it’s not even the best way. It’s always a safety net. In our state, the primary goal in every fostering case, where possible, is family preservation. Living with your birth family, when it’s safe and possible to do so, is always best. Adoptive families, no matter how wonderful and loving, cannot make up for the loss of being separated from your birth family. We can help children navigate that as they grow up, but that loss is a loss. And that loss will be felt at different times in different ways. Some of my adoptee friends felt grief most keenly when they had their own children. My own grandmother wrestled with things well into her later years of life. So it’s a lifelong journey. Kids need space to deal with that and, contrary to the happy endings of every adoption movie I’ve ever seen, these situations don’t tie up neatly. Adoptees and foster children don’t need the pressure of being perennially “grateful” getting in the way of their social and emotional health.
An adopted family is going to have to be astutely aware of the needs of a fostered or an adopted child. You’ll have to develop ways to protect your child and family from those who are curious and make inappropriate remarks about your family or children’s race, often in front of your child. We took a trip to Ikea early on when Batman arrived (new placements may require hasty home remodeling) and as I was pushing him in our cart, a woman stopped to ask me, “Awww, is he yours? Where did you get him?” He’s not a sweater, he’s a person. I almost gave the woman a warehouse aisle number. “Right by those fourteen-dollar easels, but before you get to the futons.” She, herself, was an adoptive parent whose son was born in China, which in my mind made it worse that she felt comfortable expecting a stranger to disclose that kind of information to her.
As a foster parent, you’ll probably have some interaction with the birth family, but once an adoption is final, you may have to be creative in how you include the birth family in your life. You’re going to have to be open and honest with your child about the circumstances that brought them into your family, and you’re going to probably have those conversations way before you think your child will be able to understand them. You’re going to have to fail as a parent, and be open to correction.
We adopted transracially and we’re constantly challenged to check ourselves and meet the needs of our son instead of staying in all-white spaces that make us comfortable. Over time, those familiar spaces have become increasingly awkward for us; and, we are glad for it. We have to continually cultivate relationships with people that will hold our feet to the fire and keep us accountable to our commitment on this, because as generations before us proved, it is incredibly easy for well-intentioned white folks to abandon ship and default to what feels right to us. Some of the biggest adjustments you may be called upon to make won’t seem heroic to your family or friends. You might just seem weird or distant. You may become controversial over these choices. Again, your loyalties will be tested.
There are many things about foster parenting and adoptive parenting that are similar to parenting children born to you, but for me, it has raised the stakes on what I’m doing with all three of my children. I’m not just parenting an adopted child, I’m parenting the siblings of an adopted child, and so I have to help them understand and navigate all of this, too. I’m only confident in how I’m handling all this about 23% of the time, but I’m 100% committed to doing better than I did yesterday.
I may write about this more in the future, but I think the adoption and our impending return to service as foster parents has made me wonder if I’m doing enough to help people understand this. There are so many complicated issues around adoption and fostering, and what some of these kids go through is horrific. It’s understandable that we would want to cut right to a happy conclusion. But if we do that, we’re choosing palliation over empathy and apathy over action. These kids deserve better than that.
We’ve given our Batman a loving family to call home. He’s given us infinitely more love (and a toddler’s share of trouble) in return. There is a huge need for new foster families, but these children are vulnerable, and as rewarding as the work is, it is work. It takes effort, humility, and flexibility to be a foster or adoptive family. It’s not for everyone, but everyone can be aware of how it works, and find ways to be supportive of the children involved.
If you’re curious about adoption, here are three resources that have been helpful to me so far (does not include a link to our local foster parenting association, but that’s a great help. Our county has excellent trainings and workshops on parenting.):
This week, I read a new Pew study on religion and politics in America. I’m a wonky nerd, what can I say? There’s a lot of interesting stuff in the breakdown, but what struck me most was this little ditty:
From the analysis:
Among religious groups, fully half of white evangelical Protestants (50%) say evangelical Christians face a lot of discrimination compared with 31% of the public overall saying this.
As a disabled woman and an evangelical, I have to say that the least persecuted I feel it’s as an evangelical.
I’m not saying there aren’t micro aggressions against evangelicals. For example, I hate it when people assume that as a person of faith, I am stupid or don’t like science because I am an evangelical. Science is amazing. Everyone knows that math is the Devil, not science.
And as people of faith, we frequently adopt attitudes toward one another based on the broader biases of the cultures in which we exist. I do this often, and I’m wrong when I do this: I’m not “one of those religious people.” My rep is tied to the evangelical rep. I don’t get to choose who comes to Jesus around here any more than any of you do. So I’ll call out my people in love when necessary, not to protect my reputation, but to help preserve my brother’s integrity and spur him on to doing good. But I have to guard my attitude lest I become a Pharisee on a speck-hunt.
Hear me: these microaggressions against evangelicals hurt, and many of them are judgmental in a way that assumes omniscience into the hearts, minds, and lives of other people. By all means, feel your feelings.
But the truth is, if I look at the intersections where I live, on the corner of these three elements (not the only elements) of my identity, persecution of my evangelicalism is the least of my troubles. And if I look at persecution this way, my own hurt feelings are relativized in a way that encourages me to care for others.
I’ve never been followed in a store because someone presumes evangelicals like me are criminals. That happens to people of color. Hell, if I wanted to, I could strap on loaded weapons and go grocery shopping undeterred.
If I’m assaulted, no one’s going to question my story because I’m an evangelical. That happens to women. No one looks at me as a lazy drain on society because I’m an evangelical. That happens to disabled people and the poor. I’ve never seen an evangelical turned away from giving blood. That happens to gay men. I’ve never had people suggest I be sent to an internment camp because I’m an evangelical, and there have been evangelical terrorists. That happens to Muslims.
Look, this world is hard on people generally. There’s not a society on earth that exists without pushing certain people to the margins and privileging others. I get that. And we should be working to change that.
But we aren’t as effective when we stand on a soapbox yelling, “I’ve been WRONGED!” while deeper, institutionalized, unchallenged injustices persist right in front of us. Christ told us we’d have trouble, and He told us to get involved with people in deeper water and keep them from drowning under oppression. Perhaps if we spend a little time outside our frightened, cloistered communities we’d have more perspective on this. It’s time to stop navel-gazing.
Oppression is real. But if you have the political, social, and economic power to push it back when it encroaches into your personal space, it’s probably not happening to you. At least not on the scale you perceive it to be.
What I’m getting at is that nobody puts evangelicals in a corner except us. Corners are so safe and cozy. Let’s stop hugging the wall, friends. We can do this better and gain perspective when we mix it up with hurting people instead of hiding and girding our fences. A world of love, joy, pain, and work awaits us.
I joke that I’m really on the verge of turning this into a sick-girl blog, but I’m embracing it. Be glad there will be no elaborate discussion of laboratory results today. I know I’m glad!
By now most of us have seen this headline:
For anyone who doesn’t know, the gist is, in a moment of enthusiasm-building direction, Kanye West held up his show to call out fans who were not demonstrating his idea of appropriate excitement. West pointed out a particular patron and the crowd responded in kind, booing the disloyal fan, all the while none of them (Kanye or the followers) realized the seated fan was in a wheelchair. We know what happened next. The internet brands Kanye an ableist villain.
Okay, I did it, too, but here I want to make a few broader points.
It’s easy to look at this situation and identify a pretty spectacular lack of tact on Kanye’s part. Tactlessness is his thing, though, and it was a pretty embarrassing mistake. What I’m more interested in, though, is what happened after he realized the fan was in a wheelchair. All of a sudden, it’s fine that the man is sitting. West points and says, “he in a wheelchair? Okay, only if he in a wheelchair.” And resumes his song.
As a person who has been in and out of wheelchairs since childhood for a relatively invisible illness, I’ve lived with this kind of disability policing. People want to know if your disability is real, because for some reason, we’re all suspicious that someone is faking it. It’s not unlike how people of color are profiled as criminals when shopping (or walking in their own neighborhoods), or how people using public assistance to buy food are automatically presumed to be nefarious, lazy grifters. People with disabilities have to constantly prove they have a disability.
The flip side of that is having to downplay your disabilities because too much disability means you’re unreliable, incapable, or generally useless. Thinking of people as a utility is the underlying root of both of these problems, but in both cases, the disabled aren’t given the autonomy to make their own decisions about how they want to participate in society. Those parameters are preset for you.
Disability has its own set of respectability politics. You could ask your new boss if your insurance covers cancer, but not mental health. You can need time off for a doctor’s appointment here and there, but too many, and people suspect you’re laying out of work. The example I gave last week about an arthritis advocate applying for disability coverage is a good case in point: you’re too disabled to hold a full-time job and support yourself, but not disabled enough to meet disability criteria. Disabled people have to constantly prove both their ability and their disability in order to play with the other kids. Tip one end of that balance too far, and you’re screwed.
But here’s my other point about the Kanye situation. When a celebrity makes a gaffe like this, or as I’d argue, a series of gaffes, we all pile on because, yeah, ableism is horrible. No one’s trotted out any Nazi/eugenics references here, thank God, but it wouldn’t surprise me to see people go there from time to time. Every now and then, ableist dominant culture lets an obvious bad guy through. In order to sustain its “undercover” credibility, ableism, like all other oppressive -isms, needs a villain. Villains make us look better by comparison.
Villains quarantine the problem for us, so that we don’t have to address the systemic obstacles that disabled people face. We can ignore our stigmas, perpetuate stereotypes, and generally view the disabled to be a voiceless people who need our paternalistic care. We can keep having conversations about disability (particularly conversations about how to “fix” it) and never have conversations that include people with disabilities. We can make presumptions and act as if the disabled aren’t the same as us, because then we can pretend that disability won’t ever happen to us (though it totally will, y’all).
David Perry unpacks this a little at CNN when he says:
We do it because, to the not-disabled, claiming disability seems to have a kind of power.
Thanks to the Americans with Disabilities Act, to claim disability is to ask for reasonable accommodation — accessible buildings, more time on tests, audible formats for books, Social Security disability payments, and more. Too many people seem to regard the request to accommodate as a burden and meet such requests with suspicion. The not-disabled exercise their privilege by demanding that people prove their disabilities; then, all too often, proof just generates pity, not understanding or inclusion.
But I think he’s missing something in this. Even if he’s correct that this is the attitude of the not-yet-disabled, that “claiming disability = power,” he’s still not digging into the why of that. The why is that those of us without disabilities are the norm. Everyone else is deviance from than norm. So everyone else is suspect. Ableism says that people who are disabled are the exception, they get special treatment. Even when it’s positively-phrased, “they should get special treatment,” the underlying premise is still the same: the disabled get something you don’t. They are takers, and probably fakers, because who wouldn’t want those advantages?
I see disabled people getting trapped in this corner a lot. Half of the battle for a disabled person is accepting the help they need to begin with, because here in good old ‘Merica, we can’t need anything from anyone. For me, it looks like that scrutiny for “taking” a disabled person’s parking spot. A likely retort would be, “Well, I’d happily park farther away if it meant my arthritis was cured.” In saying this, I’ve accepted the premise that the problem is my arthritis and not the attitude of the person policing me. I’ve allowed the policing and am defending my actions, while trying to make the other guy feel guilty for picking on me, a disabled person. This solves nothing.
Until we address those premises that say able is normative and everyone else is trying to get over, we’re not going to stop having these collective Kanye moments. We have to look past the obvious villain and become suspicious of ourselves and our institutions. While we may not all have the multimedia platform Kanye West has to eff it up, we all have the capacity to do it: whether it’s giving an ambulatory person the side-eye because they’re leaving a disabled parking spot, going on about how a relative or friend is “playing their problems up for attention,” or laughing at a person who talks/walks/thinks differently than we do.
The good news is we also have the capacity to learn and grow if we’re willing to face our own villainy.
And I’m giving you, dear readers, a present laced with hilarity (and profanity). If you’re not already watching My Gimpy Life, you should be, mostly because it’s free.:
I told you I’d be back for Invisible Illness Awareness Week!
Most of my life, I’ve known pain. That’s not a blues line, or a metaphor. I’ve known actual, physical pain. Many people have. I know I’m not alone in that. But since I was a toddler, nearly two-years-old, I’ve been battling a potentially crippling disease: Rheumatoid Arthritis. Not everyone knows this, but kids get arthritis, too.
For a long time, I struggled with the visibility of my disease. As a kid, I’d see my peers’ scrunched up faces, asking, “Arthritis?!? Weird. My grandma has that.”
I had the, “why doesn’t she have to do the mile run? No fair!” Comments about my “orthopedic Keds” from a guy I had a crush on because I was wearing the tennis-shoe-version instead of the then-trendy canvas style.
My parents advocated for me in the classroom, with doctors, with friends or family who didn’t understand. As my disease went in and out of remission, with flares in my knees or my hands, I had to navigate spaces differently based on each day. Because we struggled to control my disease, one day I would be fine, the next I would be home or need extra help. I needed teachers to open my milk for me at lunch long past you were socially allowed to ask for that kind of help. My fourth grade teacher once carried me back from a park because my knee was so inflamed, I couldn’t walk back with our class. I had a shop teacher who made other kids build my projects because he was determined to set my limits for me instead of letting me even give that wooden box a shot. He picked the most attractive 8th grade boy to do it, too, because my life has been, thus far, one epically-long romcom.
Most of my childhood I felt somewhat helpless, and visible to the point of conspicuousness. So as my disease became more stable in my teenage years, I worked hard to make it invisible. There would be times when I couldn’t avoid the limitations, but as a young adult, I had a bag of tricks that would protect my cover. Still, I had to constantly make judgments based on social stigmas: should I go on that hike with my friends and risk being the person that has to sit on a rock halfway around while the others finish the journey? If I drive us around, is there someone with me who can pump my gas or will I be too ashamed to ask, so I should fill up first? Will my medication’s side effects embarrass me at a sleepover or, later, in a dorm? Because of the relative stability of the disease, I was able to recruit a few trusted sidekicks who could open ketchup packets. I had people to carry my books when I had a joint in my hand replaced my senior year. And none of those people teased me for wearing elastic-waisted pants for a month (Google “adaptive clothing” sometime and see what happens: lots of velcro and outfits that look like scrubs).
Dating was rare, and difficult, and though I was more comfortable as I got older advocating for myself with doctors, professors, and other adults, being “out” about my limitations and pain was still not easy with peers. Too few people understood how rheumatoid arthritis worked. Comparing it to even more misunderstood autoimmune diseases like lupus or fibromyalgia (which my spell-check doesn’t even recognize as a WORD) was generally unhelpful. I developed standard answers for questions about my hands: “Are you double-jointed?” And snappy comebacks for people that yelled at me for parking in disabled parking spaces. I could talk about my RA on an as-needed basis, but I certainly never led with it in a conversation. I didn’t want the label. I didn’t want the presuppositions. And I could avoid all of that because, like a number of other illnesses, RA is relatively invisible.
For as long as I can remember, I’ve been a thundering advocate for other people. My mother taught me well how to stick up for, promote, and take up the cause of overlooked or marginalized people. I’m happy to be a champion for other gal. Marginalized people should know they matter. Disabled people shouldn’t worry about whether or not they’re “worth the trouble” that accessibility might cause able-bodied people. I’m a firm believer that human beings are always worth the effort.
It’s only in the last few years that I’ve begun to see how sticking up for myself should be part of my repertoire. If I can’t advocate for myself, and push for a world that makes room for me, then I’m a total hypocrite. I’ve never had trouble doing for my neighbor, but in almost a commutative version of the Golden rule, I must do for myself what I would do for my neighbor.
One of my personal heroes, disability rights activist Harriet McBryde Johnson, wrote a gorgeous story about her encounter with eugenicist Peter Singer. At one point in the debate, she describes the difference in their worldviews (emphasis mine):
To Singer, it’s pretty simple: disability makes a person ”worse off.” Are we ”worse off”? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs.
After years in grassroots advocacy for women and children, I was invited by my rheumatologist to participate in Advocates for Arthritis. So, for two days of every September for the last four years, I’ve joined a band of doctors and their patients in lobbying their government on behalf of the American College of Rheumatology to pay attention to arthritis. A team of us from every state in attendance visit as many offices in our districts as we can: House and Senate offices. We lay out our public policy priorities and ask our representatives for a commitment. Some years, we even get one. We always get photo-ops.
My favorite part of the event (apart from the actual lobbying) is meeting other patients. This year, I met a woman with fibromyalgia who is unable to work because of her disease, and the number of doctor’s appointments she currently has in an effort to get her disease under control. She was just denied disability for the first time, after seeking help from a disability law firm she saw on TV that swindled her and held up her application process in order to collect a percentage of the back-payment in the event that she was awarded.
Another patient I met currently has her Lupus under control after losing two years of her life to the disease while she was working on her dissertation. She was turned down four times by her insurance company before they finally approved the drug that has put her into remission. Neither she nor the patient with fibromyalgia “looked sick” enough to get the accommodations they needed during their disease flares. This invisibility is what we go to the Hill to talk about each year. We bring bent fork lapel pins and impossibly bent toothbrushes to illustrate how hard it is for people who “look fine” to manage their daily tasks.
This year, we talked a lot about access. Access to drugs that, if they had been available to me as a kid, would have probably prevented the hip replacement I got three years ago (and the one I’m expecting to have in the next three years). These medications aren’t cheap, and because of a number of factors, including the bizarre hyper-patenting of biological materials, there aren’t what we would consider “generic” alternatives available yet. Several of the advocates I met cannot afford their medications, which cost anywhere from $2000-7000/month. Both the Arthritis Foundation and ACR have proposed legislation that would address these costs (and insurance company evasion of cost-sharing).
The other area of access we discussed was the availability of doctors to treat our diseases. Rheumatologists are specialists, but most of the work they do is what they call, “cognitive” evaluation. Rarely do rheumatologists perform procedures or order expensive lab tests, so when you’re checking out and you take your exam slip to the payment desk, there’s only one code circled: diagnostic/evaluation. They’re essentially billing the way that pediatricians, general practitioners, or neurologists do. But they spend much more time in the room with their patients than family physicians do. Every time I see my doctor, it’s at least a thirty minute visit. She’s asking about every joint in my body and examining them. She’s asking me about trends and we discuss pros and cons of my medicines. A lot of the time I feel like a walking science experiment: because I am. Give this drug three months and see if it helps. If not, we’ll try that one. All the while, my doctor is billing fewer patients and getting paid less money.
At a time when medical school and college loans are on the rise, doctors are coming out of school compelled to choose profitable careers, not necessarily scientific ones. Rheumatology is investigative, scientific practice. It’s observation and management, not cut and cure. As a result of these factors, the average age of those practicing rheumatology is mid-50’s. Many of the docs I know are preparing to retire. We have 50 million people in the U.S. with arthritis, and fewer than 5,000 rheumatologists. Pediatric rheumatology is already in crisis:
This doesn’t even give you a complete picture of the situation. Take, for example, my home state of Virginia, looking good in the 4 or more category. One of the rheumatologists I was lobbying with told us that number is really 4 full-time pediatric rheumatologists (all east of I-95) and one part-time pediatric rheumatologist just outside of DC. He said to get to the next pediatric rheumatologist from where he practices in Richmond, driving west, you’d have to go to Louisville, Kentucky. Several of the children he sees drive 4 or more hours to their appointments with him. That’s unconscionable. I’m honored I get to tell my representatives and their staff as much [respectfully] to their faces.
We also addressed significant cuts to the National Institutes of Health research funding, which has been creating losses across academic fields and in areas of study. Many of us spent our summer watching friends and family dump buckets of ice water on their heads to raise money for ALS research.
But if you really want to support medical research, get on the phone to your member of Congress and demand a stop to cutting the National Institutes of Health budget, experts say. That’s because private donations are a figurative drop in the bucket compared to U.S. government funding. NIH pays out $30 billion a year for medical research, compared to about $5 billion raised by philanthropy in 2007. -Maggie Fox, NBC news
Lobbying on these issues has given me an awareness that I’m truly not alone. There are patients and doctors who will saddle up with those of us living with chronic illness and pain. It’s a good reminder to see my team every year and to have colleagues who are ready to just hop into a cab if I can’t keep up. But these events have also empowered me with an opportunity to make myself and my disease conspicuous on my own terms, for the greater good of others like me. It’s made me more comfortable educating people about my situation and I don’t mind being the poster girl for arthritis anymore.
These orthopedic shoes turn out to be pretty useful for marching on Washington.
I posed a philosophical question on Twitter this week: “Can systems really be changed from within?”
A couple of years ago, I got drafted into the PTA at my kids’ school. I say “drafted” because I initially volunteered for something else entirely, but was talked into taking it on when no one else would do it. I was moving out of a season of political and social activism, and I wanted to throw that energy into something closer to home. In everything I do, I want my kids to see how important it is to engage their community, and for them, it doesn’t hit any closer than working in their school.
Most people think of the PTA and they think about the stereotype.
Honestly, that’s what I thought of, too. But the PTA as an organization has a long history of social change, and a lot of it has centered on creating more diversity, protecting the poor, and advancing a democratic philosophy of education. Our school has some demographics that to me, made the prospect of PTA work more interesting. For one, our school is only 28% white, 40% of our students are hispanic, 16% are Asian,10% are black, the rest of the students, 5%, fall into that nebulous and pejorative racial designation “other.” Our school is also a Title I school, and half of our students are on free and reduced lunch. I was interested in getting involved in a PTA that served these families.
But when I got there, there wasn’t too much that defied the stereotype. We had a couple of people of color on the Board, but it still didn’t look like our school. I was at the helm, another white lady, and most of the Board was white as well. Most of our Board was from the more affluent segment of our families. And many of the programs and activities were institutionalized, driven by the “we’ve always done this” factor. Most of our Board, however, was likeminded in wanting to see an increased inclusivity in the organization. The national PTA’s standards for family engagement call for shared power: between parents, between parents and the school, and between teachers and administrators. The goal is partnership, with the understanding that both parents and educators want children to succeed and discover their unique capacities so they can contribute to the betterment of society for all people.
The first year, I just struggled to keep up. Being a part of a new class of leaders while veterans were still hanging around in Board-level positions meant dancing between preservation and innovation, history and future. We made some strides, but were really hoping to do more as sophomores. The second year, we worked to set up the next class of leaders, hoping they would build on what we started when we set out to create an environment of invitation for new stakeholders to participate. But this new class has their own ideas. Most of them are in sync with what we wanted to see change, but they’re compelled to do the same dance.
Because in the PTA, the power resides with those who show up. There’s often talk of “those parents” who don’t come out to meetings or volunteer. But there’s not a lot of curiosity about what holds parents back from PTA involvement. Rarely do we talk about how a PTA can “show up” for families.
In my time as President, and even now in my current role as membership chair, I’ve seen the best in PTA leadership: parents volunteering for hours, working full-time jobs and enduring thanklessness to make our school better for our kids and families. I’ve seen moms and dads who show up for teachers (who themselves spend their own time and limited funds on the kids in their classes). I’ve seen leaders at the district level pushing for restorative justice rather than punitive procedure in school disciplinary policies. I’ve watched them agitate for healthier meals and a more dignified treatment of children receiving free or reduced lunches.These people are champions for children. And a number of them are empty-nesters without any kids in the system.
But I’ve also seen the worst in PTA leadership. I’ve seen parents “in it” for their kid alone. I’ve seen leaders cut budgets for student activity scholarships arguing that “scholarships only benefit a few of our students,” “it’s not fair to the kids who CAN pay for us to adjust programs just because they’re completely inaccessible for poor families.” I’ve heard diatribes about parents who “don’t care enough to come to meetings/volunteer like we do.” I’ve seen leaders stand in front of our Superintendent and say their academically gifted student should be “penalized” by efforts to move kids into a mainstreamed, diversified setting. I’ve heard them say they didn’t want to shift school boundaries because they might end up at “that school” and on and on. I’ve seen elitism run amok and a concern for the bottom-line that compels poor decision-making and in-fighting over which kids get served. Every time, kids with special needs, kids living in poverty, kids that need language services (which at our school is 38% of the student body), are pushed to the margins.
Writer Suzannah Paul articulated my frustrations this week in her tweet:
See, the argument I’m getting into with my colleagues 90% of the time is a disagreement about two things: 1) what we see and 2) how we respond to it. Several of my cohorts are blind to the disparities that exist in our population, and even the disparities between the work of our school and the work of our PTA. Our educators know they have to diversity their instruction: that one size does not fit all. They *see* the population we’re serving, and they adjust their strategies to get all our kids to a point of confidence and success. They don’t always hit the mark they want to hit, but at least they aren’t wearing a blindfold and just throwing punches in the dark.
So we need to be serving the school we have, not the school that, in all our privilege, we wish we had. Secondly, we need to get real about the solutions. “Treating everyone the same” will not help all of our kids succeed. I’m very attached to this “share power” idea, and I like what Suzannah says about privileging the margins. I have no idea how I can help our current Board, myself included, take a back seat and elevate the voices of the unheard and “uninvolved” parents, but it has to be done. I’m a little concerned that our efforts to diversity leadership thus far have only achieved tokenism, window-dressing change, and not a real shift in power.
I actually got a little riled up (shocker) at a recent meeting and after several attempts to calm me down, looked at my colleagues and said, “I’m passionate about this because our PTA doesn’t exactly represent our school. Someone has to speak up for the people who aren’t at the table here.” But I’d rather have people at the table than speak *for* the marginalized. If anyone has ideas on this, please please please share them with me in the comments. Perhaps I’m taking up space by participating at all. But I’m hoping in this role that I can reach out and bring new folks into the organization, and maybe by sheer numbers, we can begin to see people with different perspectives and ideas enter and voice those ideas.
I don’t know if organizations can be changed from the inside. I don’t know if an institution can be “reformed” this way. I keep thinking about what Audre Lorde said, “The Master’s tools will never dismantle the Master’s house.” But given that the PTA is a membership organization of teachers and parents, I’m inclined to think that there’s a possibility for it to be what *we* make it. Maybe that’s naivete or romanticism. I’m open to that possibility. And I’m open to investing my efforts elsewhere, but for now, I won’t give up the ship on it.
Feel free to disabuse me of my hopefulness or to offer practical suggestions or encouragement below. I’m still working this out, so I’m pliable, y’all.