S02, Ep. 8: The Million Dollar Question
In this episode, Mandi answers those burning disability questions.
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Transcript
Mandi: Mandi Frantz here welcoming you to my podcast - Find Your Beautiful: Life Through the Eyes of a Christian Disabled Woman.
Mandi: Hey Beauties! Can you believe it?! We are in the final days of 2019 and heading into a new decade. One of the biggest lessons I've learned this year is to leave room in my plans for the unexpected. I know, it sounds cliche, but it's true. Listen, as a disabled woman with a full-time job, 2 kids, and plenty of side hustles and hobbies, planning is kinda my thing. If it's not on my Google calendar, it simply doesn't happen. However, God doesn't always go by my plan. Remember when I broke my leg at the end of April? Yeah, not in my plans. Remember when I committed to making weekly episodes for you? Well, that didn't quite happen either.Mandi: Mandi Frantz here welcoming you to my podcast - Find Your Beautiful: Life Through the Eyes of a Christian Disabled Woman.
[Upbeat Background Music]
Life for me has become a long list of things that need to be prioritized. Faith, family, career - these are my big boxes right now. It's important to say that by family, I'm not just talking about blood bonds. I believe we can choose our family and the toxic idea of, "Blood is thicker than water," simply isn't a philosophy I live by anymore. Anyways, more on that another time.
As we head into the new year, I decided I don't want to leave you with any unanswered questions about the intersection of my faith, disability, womanhood, and even culture. Ok, maybe I'll leave you with a lot of unanswered questions, but I'll do my best to get to as many as I can. Some of the questions I'll answer today are ones I've been asked in real life, while others are questions people have asked of the disability community in general. Throughout this podcast, I've addressed many of these questions through my story, but here's a brief resource you can come to.
Before I continue, I have to offer a few caveats. The first is that a lot of these questions are 100% inappropriate to ask anyone you don't have a solid relationship with. Notice I didn't just say they are inappropriate to ask disabled people. They are just plain wrong to ask, unless you're tight like that. Second, I am one person. I do my best to be a representative for people with disabilities, but at the end of the day, I am just me. My opinions and ideas are not representative of the entire disability community. I am not every disabled person. Take my thoughts as an example, not the end all be all.
Ok, let's do this thing!
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[Doorbell Sound Effect]
Mandi: Question 1: What happened to you or what's wrong?
Answer: First, this question stems from the idea that disability is bad. This stems from the belief that disability means there is something wrong or lacking. This is an ableist question. I get it though. We continue to be a minority and it is true that some people become disabled as the result of an illness or accident. So, to answer this question, for myself only, I was born with a disability called Arthrogryposis Multiplex Congenita. The specific type, yes there's more than one, is Amyoplasia Type. Congenita means this disability is not genetic. No one in my family has this disability, that I'm aware of. It is also extremely important to go back to something I shared in an earlier episode, disability is a spectrum. Arthrogryposis does not look the same in every person. Some people can walk, while other's can't. Some people are affected in their face, while others aren't. I won't go into the medical technicalities of my disability since you can Google it, but I use a wheelchair and am unable to walk or really bear any weight on my legs. I have very limited use of my arms and hands, with most of my motion coming from my shoulders and torso. My face is unaffected. So, nothing is wrong, but I do fall into the 20% minority of disabled people.
Question 2: Can you have sex?
Answer: For those of you whose jaw just dropped, imagine how I feel. I warned you. These questions are inappropriate to ask anyone, but they do get asked of me and countless other disabled people. So here it goes, yes. Yes I can have sex and do have sex. Arthrogryposis does not affect my ability to feel. There are some disabilities where people are unable to feel, but this does not automatically mean that they are unable to have sex and enjoy it. The act of sex, when done right, is a full experience that is not just about the physical act. There are a lot of ways to be physically intimate, and intimacy isn't just about the physical. Anyway, since I can only speak for myself, I'll leave it at the fact that I can and do have and enjoy sex. Due to my disability, I do have to try different positions, but it works.
Question 3. What if your kids are born disabled?
Answer: This is a question I got asked a lot before and during my first pregnancy. Even my mom, who understands arthrogryposis is congenital, was worried about this. I have a few answers to this. First, this question is once again ableist. It stems from an assumption that having a disabled child is a bad thing. There are some health conditions that I definitely understand would be make parents worried, but many people with disabilities live long healthy lives. Disability is not a death sentence and does not doom your child to a horrible, less meaningful life. Ok, now that I've said my piece on that, there are some disabilities that are genetic. I've heard some disgusting comments from people that those with genetic disabilities should not have children. I clearly disagree with this, but as I said earlier, arthrogryposis is not genetic. Both of my children are typically functioning at this point. If they end up having a disability, it isn't arthrogryposis.
Question 4: Is that your brother?
Answer: This is more of an assumption when people ask me if my husband is my brother, or even my father. It says a lot about the state of our country, maybe our world, when we believe that the only people who would take care of someone must be a parent or sibling. It's unfortunate that we believe that no one would genuinely choose to spend their lives with someone who has a disability. Is it because we physically look different? Can we not be considered attractive? Is it because we need help in different ways than non-disabled people? Is the help we need greater than the love we have to give? You know, there was a time in this country when people couldn't understand how a white person could be romantically and sexually attracted to a black person. In fact, this sadly remains a belief many hold. Yet, interracial relationships are everywhere and are, for the most part, accepted, even celebrated. Maybe someday, interabled couples will also become part of our norm. So, to answer this question, no he is not my brother or father. He is the man I married and the father of my children. There is no other relation.
Question 5: Do you have your driver's license?
Answer: I get it, I really do. You're uncomfortable. You think I must also be uncomfortable. You want to lighten the mood, help me feel like you're cool and funny. Maybe you actually think my wheelchair is awesome, which it is. However, you need to see things for what they really are. My wheelchair is the equivalent of your legs. It is the device I use to get around. It is custom designed to meet my physical needs for both comfort and function. I'm glad it's not an eyesore, but it's not a joke. You'd never ask this of someone walking, would you? And trust me, I've thought about it, especially for those of you walking and texting. So the wheelchair jokes, while they may make you think you're breaking the ice, or making things comfortable, are simply awkward. I'm not uncomfortable with my disability, no more than non-disabled people are with themselves. Do I love everything about my body? No, but it is highly probable that you don't like everything about your body either. So, no I don't have a license. Yes, I have been using a motorized wheelchair since before you learned to crawl, talk, and walk. No, you can't get a ride and unless were in a marathon, I'm not interested in racing.
Question 6: How do you...?
Answer: This is the intro to a slew of questions. When people are amazed at the ways people with disabilities live everyday life, we call this "inspiration porn." Let's be real though, it is kind of awesome! So I'll share some of my common how-to's, not to inspire you, but to share alternative ways of living. You never know when you might need to try one of these out.
So, how do I type? There are a lot of great options now. From voice activated devices, to on-screen keyboards, to eye tracking systems. However, I'm old school. I pile a bunch of books and boxes up and set my laptop on top of them so that it is at about chin level. Then, I take a pen in my mouth and use it to press the keys, one at a time. Most people who message me online are surprised at this because I type faster than many people using both hands. I can type a little over 40 words per minute.
How do I write? Though most of my schooling, I wrote with my 2 hands, it's challenging to describe in words, but I would rest the pen or pencil in my right hand and use my left hand to apply pressure and control the movement to write. When I got to college, there weren't accessible tables in any of my classes. This is, again, another issue to address in another episode. However, this made handwriting really hard for me. So, I started writing with my mouth again, a skill I learned at a very young age thanks to an incredible team at St. Mary's Hospital for Children. Since then, I've mostly written with my mouth, or chosen to have someone write on my behalf, particularly when I don't have a pen I trust (you know, germs and stuff).
How do I shower, eat, toilet, etc? Basically, how do I accomplish activities of daily living? The simple answer? With help. I use a seat designed for the shower and a seat that makes transferring to the toilet easier. I know when I need to use the bathroom and tell someone I trust so they can help me get there. The person helping, usually my husband, even helps me wipe. Front to back ladies, no infections here! I talk about the awkwardness of having my husband, or anyone really, help when I poop or during my period (which I get monthly), so go check out my other episodes for more details there. The point here is that these everyday things must happen, disabled or not, and they do. I get help with them. Before you go thinking, "That's the life, having someone shower, dress, and pamper you," this is not a spa friends. This means I rarely get to have privacy. Think about those White Castle or beer poops. I rarely take a relaxing bath. It's really hard getting in and out of most tubs and slippery! I'm regularly at the mercy of others. It's a complicated blessing with a lot of nuances. Do not envy me. Do not pity me. Just recognize my human experience.
Question 7: And this is the million dollar question. Would you be "normal" if you could?
Answer: Aside from the poor use of the term "normal," I get the intention behind this question. Would I become like the majority if I could? My honest answer, to the shock of both non-disabled and disabled people, sometimes. Most days, I'm pretty happy with myself, including my disability. I've learned to embrace it and see it as part of my identity, though it isn't the only part of my identity that defines me. I don't sit in sadness daily, wishing I could walk. In fact, in my everyday, I probably think about my disability as often as non-disabled people think about not being disabled. Sure, there are circumstances that make you think about how grateful you are to be you. There are also situations that sometimes have you begging God to give you any other life, but your own. It's all part of the human experience. Would I walk if I could? Probably, but only because it would give me access to places I currently can't access. Would I have full ability in my arms if I could? Probably, but only because I want to initiate a hug and squeeze my children with all my love. Would I erase having ever been disabled? Absolutely not! I can't describe the blessing my disability is to me. I make friendships faster than many. I love harder and deeper because of it. I'm constantly humbled. I found my voice because of it. I'm changing the world, even if only my immediate world, because of it.
There's a big question I originally planned to address here, but I think it requires it's own episode. So I'll wrap this up and hope you'll join me in 2020. It's bound to be a Beautiful adventure!
Answer: First, this question stems from the idea that disability is bad. This stems from the belief that disability means there is something wrong or lacking. This is an ableist question. I get it though. We continue to be a minority and it is true that some people become disabled as the result of an illness or accident. So, to answer this question, for myself only, I was born with a disability called Arthrogryposis Multiplex Congenita. The specific type, yes there's more than one, is Amyoplasia Type. Congenita means this disability is not genetic. No one in my family has this disability, that I'm aware of. It is also extremely important to go back to something I shared in an earlier episode, disability is a spectrum. Arthrogryposis does not look the same in every person. Some people can walk, while other's can't. Some people are affected in their face, while others aren't. I won't go into the medical technicalities of my disability since you can Google it, but I use a wheelchair and am unable to walk or really bear any weight on my legs. I have very limited use of my arms and hands, with most of my motion coming from my shoulders and torso. My face is unaffected. So, nothing is wrong, but I do fall into the 20% minority of disabled people.
Question 2: Can you have sex?
Answer: For those of you whose jaw just dropped, imagine how I feel. I warned you. These questions are inappropriate to ask anyone, but they do get asked of me and countless other disabled people. So here it goes, yes. Yes I can have sex and do have sex. Arthrogryposis does not affect my ability to feel. There are some disabilities where people are unable to feel, but this does not automatically mean that they are unable to have sex and enjoy it. The act of sex, when done right, is a full experience that is not just about the physical act. There are a lot of ways to be physically intimate, and intimacy isn't just about the physical. Anyway, since I can only speak for myself, I'll leave it at the fact that I can and do have and enjoy sex. Due to my disability, I do have to try different positions, but it works.
Question 3. What if your kids are born disabled?
Answer: This is a question I got asked a lot before and during my first pregnancy. Even my mom, who understands arthrogryposis is congenital, was worried about this. I have a few answers to this. First, this question is once again ableist. It stems from an assumption that having a disabled child is a bad thing. There are some health conditions that I definitely understand would be make parents worried, but many people with disabilities live long healthy lives. Disability is not a death sentence and does not doom your child to a horrible, less meaningful life. Ok, now that I've said my piece on that, there are some disabilities that are genetic. I've heard some disgusting comments from people that those with genetic disabilities should not have children. I clearly disagree with this, but as I said earlier, arthrogryposis is not genetic. Both of my children are typically functioning at this point. If they end up having a disability, it isn't arthrogryposis.
Question 4: Is that your brother?
Answer: This is more of an assumption when people ask me if my husband is my brother, or even my father. It says a lot about the state of our country, maybe our world, when we believe that the only people who would take care of someone must be a parent or sibling. It's unfortunate that we believe that no one would genuinely choose to spend their lives with someone who has a disability. Is it because we physically look different? Can we not be considered attractive? Is it because we need help in different ways than non-disabled people? Is the help we need greater than the love we have to give? You know, there was a time in this country when people couldn't understand how a white person could be romantically and sexually attracted to a black person. In fact, this sadly remains a belief many hold. Yet, interracial relationships are everywhere and are, for the most part, accepted, even celebrated. Maybe someday, interabled couples will also become part of our norm. So, to answer this question, no he is not my brother or father. He is the man I married and the father of my children. There is no other relation.
Question 5: Do you have your driver's license?
Answer: I get it, I really do. You're uncomfortable. You think I must also be uncomfortable. You want to lighten the mood, help me feel like you're cool and funny. Maybe you actually think my wheelchair is awesome, which it is. However, you need to see things for what they really are. My wheelchair is the equivalent of your legs. It is the device I use to get around. It is custom designed to meet my physical needs for both comfort and function. I'm glad it's not an eyesore, but it's not a joke. You'd never ask this of someone walking, would you? And trust me, I've thought about it, especially for those of you walking and texting. So the wheelchair jokes, while they may make you think you're breaking the ice, or making things comfortable, are simply awkward. I'm not uncomfortable with my disability, no more than non-disabled people are with themselves. Do I love everything about my body? No, but it is highly probable that you don't like everything about your body either. So, no I don't have a license. Yes, I have been using a motorized wheelchair since before you learned to crawl, talk, and walk. No, you can't get a ride and unless were in a marathon, I'm not interested in racing.
Question 6: How do you...?
Answer: This is the intro to a slew of questions. When people are amazed at the ways people with disabilities live everyday life, we call this "inspiration porn." Let's be real though, it is kind of awesome! So I'll share some of my common how-to's, not to inspire you, but to share alternative ways of living. You never know when you might need to try one of these out.
So, how do I type? There are a lot of great options now. From voice activated devices, to on-screen keyboards, to eye tracking systems. However, I'm old school. I pile a bunch of books and boxes up and set my laptop on top of them so that it is at about chin level. Then, I take a pen in my mouth and use it to press the keys, one at a time. Most people who message me online are surprised at this because I type faster than many people using both hands. I can type a little over 40 words per minute.
How do I write? Though most of my schooling, I wrote with my 2 hands, it's challenging to describe in words, but I would rest the pen or pencil in my right hand and use my left hand to apply pressure and control the movement to write. When I got to college, there weren't accessible tables in any of my classes. This is, again, another issue to address in another episode. However, this made handwriting really hard for me. So, I started writing with my mouth again, a skill I learned at a very young age thanks to an incredible team at St. Mary's Hospital for Children. Since then, I've mostly written with my mouth, or chosen to have someone write on my behalf, particularly when I don't have a pen I trust (you know, germs and stuff).
How do I shower, eat, toilet, etc? Basically, how do I accomplish activities of daily living? The simple answer? With help. I use a seat designed for the shower and a seat that makes transferring to the toilet easier. I know when I need to use the bathroom and tell someone I trust so they can help me get there. The person helping, usually my husband, even helps me wipe. Front to back ladies, no infections here! I talk about the awkwardness of having my husband, or anyone really, help when I poop or during my period (which I get monthly), so go check out my other episodes for more details there. The point here is that these everyday things must happen, disabled or not, and they do. I get help with them. Before you go thinking, "That's the life, having someone shower, dress, and pamper you," this is not a spa friends. This means I rarely get to have privacy. Think about those White Castle or beer poops. I rarely take a relaxing bath. It's really hard getting in and out of most tubs and slippery! I'm regularly at the mercy of others. It's a complicated blessing with a lot of nuances. Do not envy me. Do not pity me. Just recognize my human experience.
Question 7: And this is the million dollar question. Would you be "normal" if you could?
Answer: Aside from the poor use of the term "normal," I get the intention behind this question. Would I become like the majority if I could? My honest answer, to the shock of both non-disabled and disabled people, sometimes. Most days, I'm pretty happy with myself, including my disability. I've learned to embrace it and see it as part of my identity, though it isn't the only part of my identity that defines me. I don't sit in sadness daily, wishing I could walk. In fact, in my everyday, I probably think about my disability as often as non-disabled people think about not being disabled. Sure, there are circumstances that make you think about how grateful you are to be you. There are also situations that sometimes have you begging God to give you any other life, but your own. It's all part of the human experience. Would I walk if I could? Probably, but only because it would give me access to places I currently can't access. Would I have full ability in my arms if I could? Probably, but only because I want to initiate a hug and squeeze my children with all my love. Would I erase having ever been disabled? Absolutely not! I can't describe the blessing my disability is to me. I make friendships faster than many. I love harder and deeper because of it. I'm constantly humbled. I found my voice because of it. I'm changing the world, even if only my immediate world, because of it.
There's a big question I originally planned to address here, but I think it requires it's own episode. So I'll wrap this up and hope you'll join me in 2020. It's bound to be a Beautiful adventure!
[Bling]
Mandi: If you have a question that I missed, or want more clarification on something I addressed, please download the Anchor mobile app, subscribe to this podcast on it, and leave me a voice message with your questions and thoughts.
This podcast is also available on iTunes, Google Podcasts, Spotify, and any other place you like to listen! Visit my website linked in the description to get access to all the platforms.
[Mandi voiceover to 'Compton' music]: In the first episode of 2020, I'll be talking about God's vision of and for the disabled. Be sure to follow me on Instagram and Facebook at MandiBoxBeauty to stay connected. ‘Til next time Beauties!
This podcast is also available on iTunes, Google Podcasts, Spotify, and any other place you like to listen! Visit my website linked in the description to get access to all the platforms.
[Mandi voiceover to 'Compton' music]: In the first episode of 2020, I'll be talking about God's vision of and for the disabled. Be sure to follow me on Instagram and Facebook at MandiBoxBeauty to stay connected. ‘Til next time Beauties!
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