Ep. 9: Not Without My Disability
Disabled, handicap, challenged, special needs...What's the right word? The disability world can feel like a minefield to "outsiders." In this episode, Mandi is going to give typically functioning people the chance to get inside the mind of a person with a disability in hopes of offering a guiding light.
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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: Identity is defined by Google as, "the fact of being who or what a person or thing is." This is a huge part of what makes language so difficult. Identity is truly unique to every individual. People are not mass produced. So, when we try to label people, we run into major limitations in language. I grew up with people-first language, meaning when people described me, I was taught I should be referred to as a person with a disability, instead of a disabled person. However, in just a few short years, people started to feel like this type of language was insulting and automatically implied that disability was something wrong, or something that could improve. People began identifying more with their disability and in order to proactively encourage, and sometimes force acceptance, we started saying we are disabled people. This has been most prominent, in my experience, within the Deaf and Autistic communities. They identify as Deaf people and Autistic people. It is now common for all groups within the disability community to prefer being call 'disabled'. Whether it's because I grew up with people-first language, or because of how hard I've worked to just exist without unnecessary labels, I still identify as a person first.
A quick note to my disabled friends who I heard gasp and who I can see shaking their heads. Do not mistaken the fact that I identify as a person first to mean that I don't identify as disabled, or that I view identifying as disabled as inferior and wrong. I don't. I simply prefer to focus on labels that focus on similarities. I recognize my differences and, in many ways, am proud of the person they've made me, but I won't pretend they're not differences. I won't pretend some things aren't harder for me. I don't need to shout, "I'm different and you better accept me" from the rooftops to be proud of who I am. I like identifying as a person first because I enjoy being part of a community not solely based on my disability. This is a personal preference and I mean no disrespect to everyone who feels differently.
Now back to my typically functioning peeps, the very best piece of advice I can offer you is that if you are unsure about something, ask. I don't give this advice lightly because there are, unfortunately, some people with disabilities who don't take kindly to questions, even when you're just trying to do the right thing. However, asking is always your best and safest bet.
Now let me address one of the biggest reasons people with disabilities often live in a state of frustration and may seem irritable, or not interested in educating you about disability. We live life on a planet that often views and treats us like aliens from another world. I'm not just talking about those people or situations that are outright discriminatory. I'm talking about everyday life. Consider the idea of accommodations. It is a very common term and idea used to ensure people with disabilities have equal opportunities and can function in life. Most typically functioning people proudly announce when there place of business has disability accommodations. Colleges and universities talk about equal access to education because they provide outstanding accommodations. Employers boast about their employee diversity because of the accommodations they provide.
While accommodations are definitely needed in our world, and I'm beyond grateful for them, consider my perspective for a minute. The nature of the word accommodations is bending, changing, modifying something in the world not originally designed with me in mind. Trust me, I get that there were issues with people's perception of disability back in the day, but the truth is, this isn't just a historical problem. It is a today issue! Design of furniture, homes, education models, employment opportunities, the world continues to create without considering the abilities of all people. I have actually heard people say that they are against universal design because it's just aesthetically uglier, or too sterile. This is not an issue with the concept. It's a problem with the designer. Universal design in no way needs to be ugly or sterile. Beyond the very nature of accommodations, we're angrier that they are rarely freely or cheerfully provided. The American law insinuates that providing accommodations is a burden in the very language it uses when it says that only "reasonable accommodations" that don't "financially burden" businesses must be provided. Really? Look, my point is that if you woke up everyday of your life being reminded that you are an afterthought and maybe even a burden to the world, you wouldn't be all rainbows and sunshine either.
Now that I've given you some overview insight into our minds, let's talk about the do's and dont's of practical interactions with people with disabilities. Obviously, I can't offer you an exhaustive list of either here, so here is a quick summary.
Don't do, say, or ask anything you wouldn't want done to, said to, or asked of you.
Do treat people with disabilities the way you want to be treated.
I know, you were waiting for some new profound truth. However, the awesome thing about truth is that it is unchanging.
Before I end, I want to share two common occurrences that happen in my life that make me so happy, but often make typically functioning people feel awkward, or worry that they've somehow offended me.
First, due to my disability, I am unable to shake hands. I guess technically someone could grab my hand and shake it, but the level of aggressiveness it would require of someone to do this would make me quite uncomfortable. It often happens that when I'm introduced to someone, or meeting someone for the first time, they reach out to shake my hand. My standard reply is to smile and say, "I can't shake your hand, but it's nice to meet you." I can't tell you how often people either apologize profusely, or rub my hands and shoulders consoling me by saying, "sure you can," or "it's ok" in a pitiful tone.
The second situation actually happens more often with people who know me. They'll absentmindedly try to hand me something, or they'll get so excited about something and raise their hand for a high-five. I usually chuckle and will say, "Nope, I can't grab that," or "Air five!" For my friends who do this frequently, we just laugh, but for some friends, they feel bad for making this error.
I said these two situations actually make me happy because it shows me that most people see beyond my disability. For those initial introductions, people's first inclination is to greet me as they would greet anyone. In the situations where people who regularly interact with me forget I'm disabled, it means they see me for more than that one attribute. These are good things!
I am disabled. If you try to pretend I'm not, you are trying to erase a fundamental piece of who I am. I am not my disability. If you only focus on the limitations I have, you are missing out on who I am in full. Like everything else, this is a balance you can learn to navigate with practice, which requires regular exposure.
In closing, ask questions when you don't know something and follow the do's and don'ts I shared here. This will greatly decrease your risk of setting someone off and pulling them out of their Beautiful.
Mandi: In case you haven't heard, my podcast now has a website! Go to the description of any episode, or to my Instagram bio at MandiBoxBeauty to check it out. On my website, you can listen to episodes, read full transcripts, and contact me. Be sure you sign up for my Very Important Beauty (V.I.B.) club while you're there. The first email you'll get from me includes the very first letter my husband, Curtis, ever wrote to me!
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]: Next week I'll be calling out the one group we should be holding accountable to keep everyone in mind, but don't. Tune in for "Most Churches Exclude Me." ‘Til next time Beauties!
Mandi: Mandi Frantz here welcoming you to my podcast - Find Your Beautiful: Life Through the Eyes of a Christian Disabled Woman.
[Upbeat Background Music]
Mandi: "If you don't see my blackness, you don't see me." This line from the film The Hate u Give hit me hard, but not for the reasons you may think. I've shared before that I'm Puerto Rican, not Black. However, this hit me hard because if I replace the word blackness with disability, it describes a sentiment I've had a hard time expressing.
Before I go on, I think it's important to openly state that I'm not trying to minimize the importance of this sentiment for Black people. I'm not trying to roll on any toes or pull anything away from the original intent of the film. All I'm saying is that in the same way Black people identify with their blackness, many people with disabilities identify with said disability. In the same way Starr, the main character in the movie, wanted to be seen for all of her, including her Black identity, I believe you can't see me without seeing and accepting my disability.
As I mentioned last week, I recognize that we, as in people with disabilities, can make navigating life with us and around us challenging. You may not know what to say, when, or even how to say it. You're not a mind reader and you really do just want to be thoughtful and compassionate. Empathy is really key here, but it's difficult to experience empathy for a situation you have no experience with or in.
Whether you've been connected to the disability community for years, or you're interested in getting involved, this episode is for you!
Before I go on, I think it's important to openly state that I'm not trying to minimize the importance of this sentiment for Black people. I'm not trying to roll on any toes or pull anything away from the original intent of the film. All I'm saying is that in the same way Black people identify with their blackness, many people with disabilities identify with said disability. In the same way Starr, the main character in the movie, wanted to be seen for all of her, including her Black identity, I believe you can't see me without seeing and accepting my disability.
As I mentioned last week, I recognize that we, as in people with disabilities, can make navigating life with us and around us challenging. You may not know what to say, when, or even how to say it. You're not a mind reader and you really do just want to be thoughtful and compassionate. Empathy is really key here, but it's difficult to experience empathy for a situation you have no experience with or in.
Whether you've been connected to the disability community for years, or you're interested in getting involved, this episode is for you!
[Mandi voices Ad (ads change and will vary)]
[Doorbell Sound Effect]
Mandi: Identity is defined by Google as, "the fact of being who or what a person or thing is." This is a huge part of what makes language so difficult. Identity is truly unique to every individual. People are not mass produced. So, when we try to label people, we run into major limitations in language. I grew up with people-first language, meaning when people described me, I was taught I should be referred to as a person with a disability, instead of a disabled person. However, in just a few short years, people started to feel like this type of language was insulting and automatically implied that disability was something wrong, or something that could improve. People began identifying more with their disability and in order to proactively encourage, and sometimes force acceptance, we started saying we are disabled people. This has been most prominent, in my experience, within the Deaf and Autistic communities. They identify as Deaf people and Autistic people. It is now common for all groups within the disability community to prefer being call 'disabled'. Whether it's because I grew up with people-first language, or because of how hard I've worked to just exist without unnecessary labels, I still identify as a person first.
A quick note to my disabled friends who I heard gasp and who I can see shaking their heads. Do not mistaken the fact that I identify as a person first to mean that I don't identify as disabled, or that I view identifying as disabled as inferior and wrong. I don't. I simply prefer to focus on labels that focus on similarities. I recognize my differences and, in many ways, am proud of the person they've made me, but I won't pretend they're not differences. I won't pretend some things aren't harder for me. I don't need to shout, "I'm different and you better accept me" from the rooftops to be proud of who I am. I like identifying as a person first because I enjoy being part of a community not solely based on my disability. This is a personal preference and I mean no disrespect to everyone who feels differently.
Now back to my typically functioning peeps, the very best piece of advice I can offer you is that if you are unsure about something, ask. I don't give this advice lightly because there are, unfortunately, some people with disabilities who don't take kindly to questions, even when you're just trying to do the right thing. However, asking is always your best and safest bet.
Now let me address one of the biggest reasons people with disabilities often live in a state of frustration and may seem irritable, or not interested in educating you about disability. We live life on a planet that often views and treats us like aliens from another world. I'm not just talking about those people or situations that are outright discriminatory. I'm talking about everyday life. Consider the idea of accommodations. It is a very common term and idea used to ensure people with disabilities have equal opportunities and can function in life. Most typically functioning people proudly announce when there place of business has disability accommodations. Colleges and universities talk about equal access to education because they provide outstanding accommodations. Employers boast about their employee diversity because of the accommodations they provide.
While accommodations are definitely needed in our world, and I'm beyond grateful for them, consider my perspective for a minute. The nature of the word accommodations is bending, changing, modifying something in the world not originally designed with me in mind. Trust me, I get that there were issues with people's perception of disability back in the day, but the truth is, this isn't just a historical problem. It is a today issue! Design of furniture, homes, education models, employment opportunities, the world continues to create without considering the abilities of all people. I have actually heard people say that they are against universal design because it's just aesthetically uglier, or too sterile. This is not an issue with the concept. It's a problem with the designer. Universal design in no way needs to be ugly or sterile. Beyond the very nature of accommodations, we're angrier that they are rarely freely or cheerfully provided. The American law insinuates that providing accommodations is a burden in the very language it uses when it says that only "reasonable accommodations" that don't "financially burden" businesses must be provided. Really? Look, my point is that if you woke up everyday of your life being reminded that you are an afterthought and maybe even a burden to the world, you wouldn't be all rainbows and sunshine either.
Now that I've given you some overview insight into our minds, let's talk about the do's and dont's of practical interactions with people with disabilities. Obviously, I can't offer you an exhaustive list of either here, so here is a quick summary.
Don't do, say, or ask anything you wouldn't want done to, said to, or asked of you.
Do treat people with disabilities the way you want to be treated.
I know, you were waiting for some new profound truth. However, the awesome thing about truth is that it is unchanging.
Before I end, I want to share two common occurrences that happen in my life that make me so happy, but often make typically functioning people feel awkward, or worry that they've somehow offended me.
First, due to my disability, I am unable to shake hands. I guess technically someone could grab my hand and shake it, but the level of aggressiveness it would require of someone to do this would make me quite uncomfortable. It often happens that when I'm introduced to someone, or meeting someone for the first time, they reach out to shake my hand. My standard reply is to smile and say, "I can't shake your hand, but it's nice to meet you." I can't tell you how often people either apologize profusely, or rub my hands and shoulders consoling me by saying, "sure you can," or "it's ok" in a pitiful tone.
The second situation actually happens more often with people who know me. They'll absentmindedly try to hand me something, or they'll get so excited about something and raise their hand for a high-five. I usually chuckle and will say, "Nope, I can't grab that," or "Air five!" For my friends who do this frequently, we just laugh, but for some friends, they feel bad for making this error.
I said these two situations actually make me happy because it shows me that most people see beyond my disability. For those initial introductions, people's first inclination is to greet me as they would greet anyone. In the situations where people who regularly interact with me forget I'm disabled, it means they see me for more than that one attribute. These are good things!
I am disabled. If you try to pretend I'm not, you are trying to erase a fundamental piece of who I am. I am not my disability. If you only focus on the limitations I have, you are missing out on who I am in full. Like everything else, this is a balance you can learn to navigate with practice, which requires regular exposure.
In closing, ask questions when you don't know something and follow the do's and don'ts I shared here. This will greatly decrease your risk of setting someone off and pulling them out of their Beautiful.
[Sudden Transition Sound]
Mandi: This episode was intended to give a high-level overview of navigating the disability world. However, I'm more than happy to answer questions about specific scenarios like what is the best way for an employer to greet someone who is unable to shake hands?
Share your questions by downloading the Anchor Mobile App, and leaving me a voice message through the app. Your message might even get featured in an episode! If writing is more your thing, you can email me at th3mandibox@gmail.com, or find me on social media at MandiboxBeauty.
Share your questions by downloading the Anchor Mobile App, and leaving me a voice message through the app. Your message might even get featured in an episode! If writing is more your thing, you can email me at th3mandibox@gmail.com, or find me on social media at MandiboxBeauty.
[Bling]
Mandi: In case you haven't heard, my podcast now has a website! Go to the description of any episode, or to my Instagram bio at MandiBoxBeauty to check it out. On my website, you can listen to episodes, read full transcripts, and contact me. Be sure you sign up for my Very Important Beauty (V.I.B.) club while you're there. The first email you'll get from me includes the very first letter my husband, Curtis, ever wrote to me!
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]: Next week I'll be calling out the one group we should be holding accountable to keep everyone in mind, but don't. Tune in for "Most Churches Exclude Me." ‘Til next time Beauties!
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