Number in Series: Seventh

Before I was a pastor, I was a public school educator. And I’m embarrassed to admit that early in my career, I wasn’t that knowledgeable or sensitive around the education of youth with disabilities. I think I wondered how many people kids really had learning disabilities. I mean maybe they weren’t working very hard, or maybe they hadn’t had great teachers or parents.

Now there were a lot of reasons I thought this way – like most teachers, I hadn’t had enough training on disabilities. There were some biases I had from my own childhood too. But deeper than that, I guess I just thought that people are tough and strong and can do whatever they need to, or at least they should be able to. I thought: I’m scrappy, I’m a hustler, a fighter. And everyone else can be too.

I can’t point you to the exact moment this changed. It was more of a process, but I can point out some milestones in the journey.

I remember when I was training to be a principal, I was learning how to manage programs for students with learning disabilities, and we were talking about technology that helps students access curriculum and learning experiences, and someone pointed out my glasses as an example of this assistive technology. And I thought – really? I don’t have a disability, and this isn’t assistive technology. But then I considered, you know it’s true. I can’t read things more than two feet from my face, I can’t make out faces as people approach, I can’t drive safely. Unless I’m wearing my assistive technology, my glasses, that compensate for my physical disability. There you go.

Later I remember also being diagnosed with hearing loss. For whatever reason, this was embarrassing to me. I first failed a hearing test in my early 30s, but I didn’t like the idea that there was something wrong with me. It made me feel like I was getting old before my time too. So I did nothing. I put off getting hearing aids. I didn’t get tested again for years.

But then I had this group interview, in a room of nearly 20 people, and I mentioned in advance that it was hard for me to hear in a room full of people… and the HR manager running the show told me a “reasonable accommodation” would be to give me a printed copy of all the interview questions, which he did. And it actually helped me interview well enough to get the job. And I realized I’m being treated like I have a physical disability, because in fact, I do. I can’t hear high pitches without help, and most consonants in English are high pitches. Hey, I’m not perfect, I’m not strong in the sense of totally self-sufficient. I need things.  

And then eventually I get these hearing aids I’ve been wearing every day for the past six years. And suddenly, I can pick up on all the conversations going on around me. I’m a little more socially engaged again. I rediscover the beautiful sound of rushing water. Help, grace, strength for me in my weakness.

And then there was my experience I shared about at the start of this series, when

This past year, I was diagnosed with ADHD… and again, there was this mix of really… I have that? That can’t be so. And oh, wow, that explains so much… And in the ADHD world you realize, oh, this is a pain… There are some difficulties to yourself and others when you have ADHD. But this is also like a superpower too. There’s good that comes with this. I wouldn’t want to not have ADHD. I wouldn’t be the same person. Maybe it’s cliché, but I’ve learned I’m not disabled, I’m differently-abled. This so-called disability is part of the good of who I am, even in the ways it makes me need help.

Here’s where I’m going with this.

We’re in the seventh and second to last week in our fall series, An Embodied Faith. We’ve tried to dispel this notion that faith is only concerned with our souls or our spirits. The idea that there are a small set of so-called spiritual topics that are suitable for faith and church we’ve called disembodied faith, because it’s faith as just abstract ideas, faith that ignores the reality we live in these bodies of ours. We’ve talked about how Jesus-centered faith is very much an embodied faith. It sits in an ancient Hebrew legacy of earthy experience of the intersection of our real lives and a hope in God. And it claims the reality that God has entered our experience in a body, proclaiming all of our embodied reality spiritual.

I’m going to wrap things up next week thinking about what it means that we’re made out of dust, but this week we’re going to look into a really specific topic that I think has interesting implications for all of us.

I’ve called it Disability and Grace: A Primer for the Strong and for the Rest of Us. Because I suppose there are some of us in the room who are in no way disabled. Who are strong in all respects, physically and mentally and emotionally. But the truth is that most of us are disabled. We are physically disabled in some way – as I am with issues with both sight and hearing. Or we are learning disabled in some way, or at least differently-abled – as I am with my ADHD. Or to be broad about it, we are emotionally disabled, we have mental health challenges or uniqueness to our emotional make up that requires particular attention and care.

If we grow up and are honest with ourselves, or have to confront our limitations, most of us discover that we are not our culture’s perfect ideal of a human being or a human body. And it’s not just that we’re not trying hard enough, it’s that it is entirely out of reach.

If you’re one of the few, the strong, I hope you’ll get something good today. And if you’re one of the rest of us, I hope you’ll hear or discover or consider again some important things about disability and grace. That perhaps our culture’s perfect ideal of a human being is more idol that gift, more distraction than goal. And that all of us are in fact impossibly strong and resilient, but our strength in not in our self-sufficiency or perfection. Our strength is tied into our abilities and also to our acceptance and experience of grace in our dis-abilities as well.

I want to begin with a look at two scriptures, two experiences of followers of Jesus, around this topic, and then I’ll invite another member of our congregation, a friend Laurie Bittman, who’s lived her whole life with physical disability to share a few thoughts as well.

Our first scripture is:

John 9:1-3 (NRSV)

9 As he walked along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 Jesus answered, “Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him. 

Now at first blush the disciples sound “CRA-zy.” Such a weird notion they have upon meeting a physically disabled person to ask, not just what’s wrong with him, but is it because of his sin or his parents sin, that he is blind?

Truth is, though, that Jesus’ students are in a long tradition of interpretation around faith and disability – to see something wrong with people and to ask whose fault is this?

Jesus weighs in here on this old tension in their Hebrew scriptures. Because a lot of this Scripture, what Christians call the Old Testament, teaches that people get what they deserve. A little like karma, there’s extensive teaching in the Hebrew scriptures that God rewards the faithful, and punishes the faithless. The good receive good in return, the bad receive bad. You see this in parts of the Torah – the first five books of the Bible known as the Law, that announces blessings for people who do what God says and curses for those who don’t. You see it in much of the historical books as well and the related prophetic teachings. Again and again, the favorable and unfavorable circumstances of Israel are connected with the trust in God and obedience to God, or lack thereof, of Israel’s leaders or of that nation as a whole. You get what you deserve, so if you’re disabled, we might ask – whose fault is it? Yours? Your parents’? Maybe God’s fault? This is what the disciples wonder.  

But there’s a counter-tradition in the Hebrew Scriptures, a minority voice you could say, that challenges this. You find it in the Old Testament’s poetry and songs – books like Psalms and Job and Ecclesiastes. These teachings push back and insist that life is more complicated. People often don’t get what we deserve. There’s some mystery and chaos in why things happen the way we do in life. Perhaps we can’t fully understand.

This kind of nuance and humility, the capacity to see shades of grey, and not just black and white, is a mark of maturity within the scriptures’ tradition, just as it is in human development today.

And Jesus here profoundly weighs in on the side of this counter-tradition. He sees the blind man, and hears the disciples question about fault, and Jesus thinks, “Fault just isn’t an interesting word.” Like many things in life, it’s nobody’s fault. There isn’t really an answer to this question. It’s just the wrong question.

I know when we have things go wrong in our bodies or lives, or in our children’s or other people that we love, we don’t usually ask if it was their sin or their parents’ sin that caused the problem. That question comes from another age maybe. But we often do wonder whose fault is this. Did we mess up? Did they mess up Did God mess up?

I wonder if Jesus suggests here that when we do this, we’re asking the wrong questions. Jesus instead greets things the way they are, he radically accepts life as it is today and wonders what is possible. What is things are the way they are so we can see the work of God in this?

Jesus says, this man is how he is so the work of God can be revealed. And what does “God’s works being revealed” mean? What does healing look like?

Well, in this case, it means a miraculous restoration of sight. But we know that both in our experience and even in the scriptures, this isn’t normally what the work of God looks like. It’s awesome when it happens, it’s very much worth praying for, but it is not the norm.

So to keep asking this question, let me take us to the second scripture, from the letters of Paul, a first century follower of Jesus who helped start several communities of faith around the Mediterranean world.

For Paul, healing and grace and deep experience of the power of God sometimes looks less like change, and more like acceptance.

II Corinthians 12:1-10 (NRSV)

12 It is necessary to boast; nothing is to be gained by it, but I will go on to visions and revelations of the Lord. 2 I know a person in Christ who fourteen years ago was caught up to the third heaven—whether in the body or out of the body I do not know; God knows. 3 And I know that such a person—whether in the body or out of the body I do not know; God knows— 4 was caught up into Paradise and heard things that are not to be told, that no mortal is permitted to repeat. 5 On behalf of such a one I will boast, but on my own behalf I will not boast, except of my weaknesses. 6 But if I wish to boast, I will not be a fool, for I will be speaking the truth. But I refrain from it, so that no one may think better of me than what is seen in me or heard from me, 7 even considering the exceptional character of the revelations. Therefore, to keep me from being too elated, a thorn was given me in the flesh, a messenger of Satan to torment me, to keep me from being too elated. 8 Three times I appealed to the Lord about this, that it would leave me, 9 but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. 10 Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong.

So two weird things to clear out first. Paul is talking about mystical spiritual experiences here. He’s using language that’s more at home in the first century than today, like this idea of layers of heaven. And he’s kind of awkward about it, like he’s compelled to share about this particular mystical experience, but that it’s sort of private and hard to put into words, as is true of all spiritual experience, so he’s uncomfortable. He shares it, though, both because it’s the story behind this big insight he’s had and because this experiential connection to a living God is at the heart of a point he wants to make about disability, weakness, and strength.

The other weird thing here is all the talk about boasting. In first century Roman culture, boasting about your gifts and strength was kind of part and parcel of being the man, of male dominance, and male leadership, as it has been in many cultures. Sometimes our own included. Most leaders, if you pay attention, spend a lot of time tooting their own horns, or making sure someone else is doing this, or telling you about someone else who is doing this.

Paul seems to think this might not be especially healthy, but he wonders if he needs to play the game. And he gets sucked into this for a bit, until he subverts this game entirely. He says: you know what’s really interesting for me is that I have this profound problem, this profound point of suffering.

We don’t know what this is. There’s been loads of speculation that Paul could have had a chronic illness or that this thorn in Paul’s side could be emotional suffering, what we might call a mental health challenge. Some have wondered if this could be profound, persistent temptation, and what’s great about Paul not saying just what this thorn is, is that it could be any of these things for us. We can see ourselves in this passage. Most likely, though, the thorn in Paul’s side is a physical or learning disability – a stutter or other speech impediment, a condition like epilepsy, or chronic pain. Brother Paul, the writer of so much of the Bible’s New Testament, was disabled too.

And Paul says, here’s what’s special about me, not that God changed me. No, what’s special about me is that when I’ve prayed about this, Jesus has spoken to me, and Jesus has said you won’t ever be what you call perfect.

You will remain incomplete. You will remain weak.

But that’s good enough for me. You will experience grace and power in that place of weakness, and that will be part of how you know God, and how others know God through you. Your strength will be tied to your weakness.

Hold that thought. Before I bring this home, let me introduce you to a friend of mine, a member of this community to share about her experience along these lines. Welcome, Laurie Bittman.

Laurie, could you introduce yourself however you like?

Hi there! I’m Laurie! I have been a part of this church community since 2001. I have my Masters Degree in Counseling from Gordon-Conwell Theological Seminary and I’ve worked in healthcare for almost all of my adult life. For 12 of those years, I worked in the Spiritual Care services department at a local hospital, so I have spent a lot of time thinking about the intersection of spirituality and health on a professional level as well as on a personal level. I was also born with a birth defect called Spina Bifida.

Could you tell us a bit more about what spina bifida is, Laurie, and how this has impacted you?

Spina Bifida is a birth defect where the spinal cord does not form correctly. The best way to visualize it is to compare the spinal cord to an electrical cord. Spina Bifida kind of like a frayed electrical cord. As a result, the body cannot transmit and receive nerve impulses correctly.  

Each person who has Spina Bifida is impacted in different ways. My symptoms fall in the moderate range. I have had a total of 4 surgeries related to Spina Bifida and I wear a brace on my left leg that helps me to walk more easily. 

I do not have any feeling in the backs of my legs from my hips down which is quite dangerous. A few years ago I went on a walk in the woods while breaking in a new pair of shoes.  When I got home from the hike, I discovered that I had developed a large blister on my foot that I never even felt.  Unfortunately, the blister ended up tunneling through my foot and caused an ulcer that took over two years and a major surgery to fully heal. 

And then there is the emotional and financial toll of living with a lifelong disability. I worry about my future. I worry about what happens if my health deteriorates and I cannot work. God forbid I lose my health insurance. That could break me. How would I survive? To me, the fear of the unknown future is the hardest part of living with Spina Bifida. 

However, even though I have a lot going on, in all reality, I live a pretty normal life! Spina Bifida is just a part of who I am. It does not define me.

I know that some parents, when the mother is pregnant, hear their child will have spina bifida, they consider, or are counseled to consider terminating the pregnancy. Without getting into the politics of abortion, Laurie, I want to note, here you are, living a wonderful life. How might parents think about the possibility of a child having a physical disability, or how might parents think about the experience of their children with disabilities?

This is such a sensitive topic and I am actually really glad that you are bringing it up, as there may be people in our community who have had this experience. So I want to start by saying that if there is anyone here who has ever been in this space, my heart is with you. I can only imagine how difficult this must be and I trust that whatever decision you made, you made it based on the best information that had been given to you from the medical professionals and that it was a decision that you made with love and with the best of intentions for your child. 

Learning that your child has been diagnosed with a significant health problem can be a very overwhelming experience. Families are faced with reconciling the fact that the life they had envisioned for their child is not going to look quite as they thought.

While medical professionals can speak from a clinical perspective, they may not understand what it is like to actually live with these diagnoses. Thankfully, we live in an age where there are so many different resources available to meet others who have the same condition. Through the years, I have been a part of a wonderful online community, that is made up of adults with Spina Bifida, parents of children with Spina Bifida, and parents who have just learned of the diagnosis. In this group we all share our non-sugar coated reality with one another, but in a way that the new comers to the group can see that even though we face serious challenges, that we actually lead pretty fulfilling and normal lives. Groups like this are where it is possible to start to reshape the medical information and start to better understand and envision what living with a particular condition could look like. For example, many people think that it is a hardship to be quote “stuck in a wheelchair.” However, for the user of that wheelchair, it is a tool of freedom and independence. By engaging with people who are living the experience, one is able to able to find new hope and possibility in what can feel like an overwhelmingly dark time.

How have you experienced what Paul calls “God’s grace for you in your weakness?”

I should have been diagnosed with Spina Bifida on the day I was born. My Mom is a nurse and from the very first time she saw my back, she suspected that I had Spina Bifida, but the medical team dismissed her concerns. Nine years later, I began having difficulty running, walking, and even writing.  My parents took me back to the doctor but once again their concerns were blown off. Thankfully they persisted in looking for a doctor who would listen to them and finally found one. It was at that time that I was finally diagnosed and was scheduled for surgery on my spine. 

Some of you may be thinking, “misdiagnosed for 9 years? Where’s the grace in that?”

During the 9 years from my birth to my diagnosis, medical technology advanced quite a bit, including the development of equipment that would allow a team to monitor intra-operative nerve impulses. At multiple points during surgery, the alarms from this equipment sounded, alerting the surgeon that he was getting too close to key nerves, and he was able to back off, therefore preserving nerve function and quite possibly my ability to walk. 

A 2nd example is from this great church community. Almost two years ago, I underwent a major surgery to reconstruct my foot. I was out of work for 3 months and I could not put any weight on my foot for 10 weeks. Now let me say, in many ways, living with Spina Bifida has made me a proud, fiercely independent woman. I am stubborn too. I have had to overcome a lot in my life, and now I was being faced with a situation where I was going to need a lot of help. It was humbling! Thanks to this amazing church community and beyond, I basically did not have to cook a single meal during my recovery period. I had friends and family who not only visited me, but also drove me around or shoveled my car out after snowstorms so that I could get to medical appointments. God’s Grace through community encouraged me and kept my spirits up on those dark winter days. 

And I know that we’ve talked about how for many people with visible disabilities, they can be the targets of other people’s prayers. Like can I pray for your healing? I heard an interview with two people who took a pilgrimage in Spain. One friend pushed his physically disabled friend in a wheelchair the whole way, and they realized everyone that saw them was feeling pity for the friend in the wheelchair, and people were sometimes stopping them and offering prayers for healing, but what was going on in these guys’ lives was that the non-physically disabled one had every bit the troubles – maybe more troubles – than his friend in the wheelchair. And the guy being pushed didn’t need their pity at all. He was offering his friend as much help, in different ways, than his friend was giving him. So all those offers of prayers for healing weren’t helpful. They just felt really misunderstood. All to say, how have you come to understand what Jesus calls “God’s work being revealed in us”, what some would call healing?

Through my work in the hospitals and also my own journey, I have learned that healing is not just a physical act. Healing can take on many different forms.

Whenever I have the opportunity to pray for someone in person, I will ask them, “what do you want me to pray for?” If the response is “healing” I try to dig a little deeper. “What does healing look like for you?” Some people will indeed want you to pray for a physical healing, and if that is the case, go for it. But oftentimes, you may find that it is more nuanced than that. One of my chaplain colleagues once asked a patient who was dying how she could pray for him. “I want to go home.” She probed gently “do you want to go to your house, or do you want to go home?” His response, “I want to go home to God.” Through this line of questioning and prayer, she was able to help the patient and family to understand that for the patient, healing meant letting go of life in its earthly existence, and walking into God’s embracing arms. The context of that conversation was able to bring this family peace as they were grieving the eventual loss of their loved one and it gave the patient the strength to refocus the time that he had left on his family instead of his illness. 

For me, there was a time when I spent years praying for a physical release of my symptoms, but it did not happen. And for a while, this was detrimental to my faith. Was I doing it wrong? Should I be praying harder? Why was I still carrying this burden? But over time, I learned that for me, healing did not necessarily mean a cure. For me, healing was being okay in my own body, just as it was. Healing was recognizing that each and every day that I am alive here on earth and enjoying all of life’s joys and challenges, that is a gift from God, and that is good. God never promises us that there will not be suffering or pain in life, but what He does promise us is that He will be there in the thick of it with us. And that is where I found healing. 

If someone could snap their fingers, and make it so you’d never have spina bifida, would you want that?

There are definitely some aspects of Spina Bifida that I wish I did not have to deal with, such as some of the physical symptoms or the financial burden that comes from living with a disability. Those things are can be challenging to cope with at times and have brought a fair amount of stress and anxiety to my life at times. So if someone could snap their fingers and take those burdens away…go for it!

But in terms of the experience of having Spina Bifida, no, I would not want to lose that. For all of the challenges that arise from living with a permanent disability, the positives far outweigh the negatives. Living with Spina Bifida has given me passion. It has given me empathy. And it has given me a drive in life to work in the medical field, with others who have disabilities or serious medical conditions. Living with Spina Bifida has shaped the way in which I view the world and allows me to see God’s beauty, in all of His creation – even if it not as one envisions it would be. My life feels richer because of what I have experienced and I do not take a single day for granted. And to me, that’s a gift.

Thank you so much, Laurie, for sharing with us.

If you’d like to read a bit more of Laurie’s thoughts and experience, she has a blog on faith and disability on ReservoirChurch.org.

Well, where does this take us? Let me some up, and invite us into our two weekly invitations to flourishing in the world and to spiritual practice.

First, we have got to rethink our expectations for the human experience – our own, our children, our friends and employees and bosses. Because if perfection or strength or the good life means low weakness, low problems, not disabled, then we are going to be continually disappointed in ourselves and in others and we are going to be continually angry with God. This life of ours is a weak one. It is often a dis-abled one. To find joy in our lives, and to love pretty much anybody, is to accept this. To make peace with disability.

Secondly we need – as Laurie told us – a broader picture of what healing is, of how God’s work can be revealed in us. Sometimes God’s work of healing is change – through scientifically understood means or through miraculous, hard to explain means. That’s awesome. But often healing means profound acceptance and peace with the way things are. That too is a work of God. And that kind of peace opens us up to possibility, to see redemption – good coming out of what we might call bad. Purpose coming out of our pain and limitations. This too is the work of God.

And lastly, I think in faith and disability, we discover one of the most salient features of Jesus-centered faith. We discover what grace is. None of us is self-sufficient. We all need help. We are all vulnerable and weak, and the goal of a life of faith is not to change that. To try to be self-sufficient, to hope to be invulnerable, is actually called idolatry. That’s counterfeit faith, dishonest faith, to think we will ever be perfect or whole or complete in this life. And it does us no favors.

Grace, though, is to know that even in our not enough, we are good enough. In the acceptance of our limits and vulnerability, we find a part of our true selves, beloved and made special and strong by God. In our need for help, we’re made open to the help of God and friends. Right where we see weakness, we find we’re strong.

This is good news faith, my friends.

A Tip for Whole Life Flourishing:

Where can you practice more grace and more respect for specific people you know with disabilities? Do you have power in your public life to better advocate for the full inclusion of people with disabilities?

Spiritual Practice of the Week:

Identify an area of significant weakness or disability, in you or in someone you love. Each day, consider one way in which you or that person has found strength in that weakness, or one way in which God has goodness has been revealed in this area of weakness or disability.