The first time I ever “liked” coffee was in my junior year of high school, when I was sick of all of the sweet stuff that they filled the whole cup with.
The first time I thought I was beautiful, I was out in Cannon Beach, with my long distance friends, walking barefoot in the sticky sand. I was independent, holding my own, and feeling overwhelmingly loved.
I first realized my parents were their own, individual people, with lives and dreams, when my dad was sneaking jelly beans into the olives at Thanksgiving.
The first time I realized that my best friend was really my best friend was when we sat down on an outside porch of a restaurant, overlooking the Puget Sound, and we shared. Really really shared. We were both in dark, separate places, with thousands of words hidden below the surface. But it was the beginning of growth.
The first time I tried to express myself, I dyed my hair blue. “I couldn’t keep up with the upkeep,” I would tell people when I cut it all off, but really, I think, I just found something that felt more “me”.
I first felt true acceptance, when I was 10, in the computer room with my dad and I received Christ.
The first time I realized I wasn’t invincible, I was in the ninth grade, and my world was turned upside down. I was 16 years old, in the middle of that awkward “discovery phase” that every teen goes through. I had finally found some real friends, and was exploring my interests of art, history, and musicals. I was cast as a lead role in the school musical; it was probably because I was the only one who could do an Australian accent, even though I learned it from H2o: Just Add Water. Within four weeks, I had lost 20 pounds and a lot of hope. My nights were characterized by desperation. Everything was being robbed from me: sleep, food, comfort, and peace.
I remember when I had reached my wits end, sitting on the bathroom floor, asking my mom why this was happening to me. I was in unbearable pain, a discomfort so urgent and jarring that I couldn’t perfectly describe it if I tried. This situation wasn’t necessarily unfamiliar, but unexpected. I’ve had chronic health issues my entire life, but only after this one occurrence did it really seem real. I had been healthy for a number of years without any issues – so when it came back, teeth bared, kicking and pulling hair, I was in denial. And when the diagnosis came and the illness was resolved, a deep weight sat inside me for a long time. When will this happen again? “It has happened so many times while you were growing up”, my mom had said. But that didn’t make me feel any better. I was a different kid. And accepting disability and chronic illness, especially in your years of self exploration, can be a whole other mountain to conquer.
For many, this is a similar anecdote that describes their life. Constant check-ins, chronic fatigue, many nights laying on the floor, people looking you up and down when you mention a disability. A lot of abled folks are uncomfortable with this idea. They’ll talk about anything – politics, religion, sex, mental health, oppression; but when it comes to disability, suddenly, something is disingenuine. Maybe it’s the sheer depth of the topic. Maybe it’s too personal. Maybe people are just afraid of asking the wrong question.
Disability and chronic illness can sometimes seem like a closed door. Something you just have and can’t get rid of. The reality is that the word covers a multitude of factors, diagnoses, and individuals. The main three ways we can classify disability is it being chronic or acute, physical or mental, and visible or invisible. Each factor changes how the world may treat it and how anyone may live with it. For me, growing up with a chronic, physical, and invisible disability (since birth) has shaped how I view the world and interact with it.. Just like your race, height, or sex may affect your life and how people treat you, disability can be just as important a factor.
Pictured: Newborn Emily Busha and older brother Tyler
A big part of my accepting and living with my own disability has been my relationship with God. I have come to realize that my body, while it may be different, is still made in His image and is just as much an expression of His art as another person’s.
My body is broken. My body is faulty, and sometimes it feels like it is betraying me. As disabled people, our bodies are a direct visualization of the broken world that we live in. Yes, disabilities are to be taken seriously. Yes, disabilities are an important part of an individual. But as a Christian woman, it is important to me that my identity in Christ comes before any other. I am a Christian woman who happens to be disabled. As is explained in the story of Joseph in Genesis 50:20 (ESV):
“As for you, you meant evil against me, but God meant it for good, to bring it about that many people should be kept alive, as they are today”
The theology of disability is something that has been floating around for quite some time – especially recently with this last month of February being Rare Disease Awareness Month. It is important to remember that while people are beautiful, unique, and treasured, we can also assume that sin affects every part of life as we know it. How we encounter the world, how we taste success, how we walk in other’s lives – they are all under the effects of the Fall. The Fall changed everything- when Adam and Eve made the decision to sin, they distanced themselves from God. After they were expelled from the garden, the world was no longer perfect. There would be pain, and sadness, and hurt in their lives. Sin would rule their hearts and their flesh.
John 8: 34-37 (ESV) says: “Jesus answered them, “Truly, truly, I say to you, everyone who practices sin is a slave to sin. The slave does not remain in the house forever; the son remains forever. So if the Son sets you free, you will be free indeed. I know that you are offspring of Abraham; yet you seek to kill me because my word finds no place in you.”
While my disability reflects the consequences of the fall in the world and the insufficiency of my flesh, it has forced me to face other issues within my heart so that I can truly work on my faith and become more like Christ as I learn, grow, and interweave myself in who God tells me I am. Bodies are faulty, and my body will not last, but when our flesh is restored, everything will be different. My disability has shaped who I am in Christ and as a woman in this world
Just because my disability is a result of the fall, does not mean that it is without purpose. God still has the power and authority to display his glory in any way he chooses. As John Piper puts it in his book, Disability and the Sovereign Goodness of God:
“Being loved by God, and being with God forever, is better than having eyes and better than being alive in this world. If we don’t believe that, then saying that God has wise and good purposes in all our losses, will not be much comfort. But if we do believe it, not only will God’s purposes comfort us and strengthen us, but they will make us able to patiently, and gently help others through their times of darkness…”
Disability, suffering, pain, death, it all points us to Christ and how he changes things. The purpose of pain and hardship are this: that Jesus would make it all new and clean and holy. In the end, all things will be made new and God will ultimately be glorified. As Revelation 21:4-5 (ESV) states:
“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.
To open up this conversation, I asked some of my abled friends to pose some questions that they have regarding disability.
How should we approach the subject of disability, especially when it is invisible?
I get this question a lot as a person who is very open about their struggles and experiences. This topic generates a lot of stigma.People often treat it like it’s a bomb, ready to blow when you take one wrong step; when in reality, it is just an additional factor that affects someone’s life. I think being open and asking your friend “can I talk and ask questions about this/joke about it with you?” really helps. You’ll find that a lot of people are extremely open and love to answer questions. I know for me personally, jokes about my disability, if in good heart, are some of the funniest. They make me feel valid and accepted, especially when someone wants to engage with me and ask about my story.
Is it okay for me to check in on my disabled friends, or should I avoid asking about it?
This really depends on the specific friends. Putting the idea out there before engaging about it is really big in my personal life. It’s a safety net, so that if the person doesn’t want to talk about it, they don’t have to. Prefacing a conversation or relationship with a “if this is uncomfortable or you do not want to talk about this, just let me know” can be helpful for disability specific conversations when you don’t know the person’s boundaries. I know for me, especially when I am having a hard week, getting a text or call from someone to check in means a lot to me. It means that they are as much here for me now as they would be if I got a cold.
What do you see in the behaviors of abled people that you wish was different?
For me, the stigma and treatment of the topic are the biggest issue. People are eager to talk about topics like sexism but not so eager to talk about the prevalence of ableism. People treat disability like it’s a topic to tiptoe around, like one move will offend the individual. It is understandable that people feel this way, since it is a topic that has been taboo for a long time. People are uncomfortable with change, and that’s ok. For the disabled community, many of us find pride in our disability and experiences- not only have they changed our outlook on the world, but they have changed who we are as people.
Do you think there are enough resources out there for me to educate myself without having to ask my disabled friends?
I think as a community, we are getting there. There is still a lot of growing to do in terms of widespread education. Disabled people have only just begun talking openly about their experiences and lives. I suggest following disabled influencers- their content is easy to access, inclusive, and made with the goal of education. People like Shannon Barry (@barry_happy on insta), or Amber (@amberostomy on insta) are some people that I look to with illnesses similar to mine for information and resources. This question really threw me for a loop- it made me realize that even as a disabled individual, I don’t have many resources for other disabilities, only those that are similar to my own. This is a big issue that I think I need to work on! If you want specific resources, sometimes asking your disabled friend is a good idea! Often they have people that they follow or websites they utilize that represent them (exhibit a: my resources).
How have you personally seen ableism and how has it affected your personal life?
One of my first real confrontations with ableism was when I traveled to Basque Country, Spain, for a family trip. I was lost, in the city, and in desperate need of a bathroom. I have never felt more disregarded than when every bathroom I came across required payment, or had a time limit. Yes, a time limit. As a disabled person, this experience was very trying for me and forced me to face the accommodations (or lack thereof) that some people face in different areas. I haven’t traveled very much, so for me, it was jarring to feel this kind of new discrimination.
What can I do, as an ally, to help the disabled community?
Being aware of your own privilege is important in accessing the disabled world. Doing what you can to help (but not baby) the community, such as not using the disabled toilet, not using a disabled parking space, or offering up your seat on the bus to someone who needs it are just some things that I can immediately think of.
Giving disabled people the space to share their stories is also important- not gaslighting their experience is common decency when trying to engage with them or when giving them the opportunity to speak.
A big one is also helping to break the stigma against the topic. Not using the “R word” and treating individuals like adults is helpful. If a disabled individual is in public and needs help, often they will ask. Never assume that they need help, touch an assistive device or animal, or make assumptions unless they voice permission. Many abled people think that disability means “less able” or “less of an adult”, when really, it just means different!
To learn more about my experience, I was featured in a Hannah Witton video linked here! https://www.youtube.com/watch?v=gu2K7WpePcw If you have questions about this topic or the community, please feel free to send me a message at bushae@spu.edu to chat!