Maria Zuccarello

@maria-zuccarello | contributor
Maria is a 20-year seasoned special education professional. She is a product of special education herself growing up with hydrocephalus and Goldenhar syndrome. She loves to share her story with her students and parents. When she is not teaching, Maria spends time with her husband, newly adopted son and cat. You can follow her blog at: www.disabilityramblings.wordpress.com.
Amanda Reavey

How Disability Is a Social Construct

The other day, I lost my phone. After several minutes of searching, my mom suggested I use my Apple Watch to ping the phone. What a great idea! I pinged the phone and immediately realized it was a sound only. Because I am hard-of-hearing, my mom had to find it for me. I reached out to Apple in hopes of learning how to set up the phone so that it flashed the light instead; however, they let me know it wasn’t a feature and redirected me to their website to “request” it. A request is not a guarantee. Therein lies the rub. In the United States alone, about 15 percent of adults aged 18 and older are deaf or hard of hearing. That’s about 37.5 million people! With the majority of the population also using mini-computers (ahem, I mean “cell phones”), rather than landlines, that’s a huge portion of the populace not able to use a primary mode of communication. Never mind that businesses would probably make more money if D/HH people were included in decision-making, let’s talk about disability. Disability is not something I have; it’s something imposed upon me. Adopted by the United Nations General Assembly in 2006, the “Convention on the Rights of Persons With Disabilities” is an international human rights treaty. While it does not define the term “disability,” it adopts the social model of disability, stating that disability is “an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.” Further, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” This social model of disability keeps in mind a justice-oriented society, rather than an equal or equitable one. Whereas equality means individuals benefit from the same supports to reach the same goal and equity means they are given different supports to reach the same goal, justice means the barrier itself has been removed so relatively few, if any, supports are needed. Thus, disability is defined as the “disadvantages or restriction of activity caused by a society which takes little or no account of people who have impairments and thus excludes them from mainstream activity,” and impairment is “individuals with learning difficulties, physical impairments, sensory impairments, facial disfigurement, speech impairment, mental illness, mental distress.” Disabled people are then defined as people with impairments who have been disabled by society. And this is precisely why the non-reaction about the “Find My iPhone” inaccessibility galls me. It offers features for one person but not another. It inextricably links accessibility and disability. In essence, it inextricably links disability and accessibility, with the latter defined in relation to whether something is usable by an individual with a disability (conflated with impairment), and the degree of accessibility depends on how well or how much it could be used by said individual. However, in the social model, accessibility considers both reasonable accommodations, which suggests accessibility is on an as-needed basis (do you remember the 37.5 million people?), and universal design, which is the removal of barriers created by society by creating materials, products and environments that are usable by all people, regardless of whether they have an impairment, to the greatest extent possible. Seriously, just add the flash. ————————————– Please note: I acknowledge the controversy over using the word “impairment.” Though once considered politically correct, “impairment” now connotes that something is not as it should be and needs to be fixed. However, the ADA uses the word “impairment” and so for the purpose of clarity, I do so here.  

Alexia Kemerling

What I Wish I'd Known About Deaf Anxiety

As a child with hearing loss I was taught to read lips, to enunciate my own speech, to carefully clean and store my hearing aids. Surrounded by a community of able-bodied people, I was also taught to blend in and pass as a hearing person. The nod and smile, the awkward half-laugh — these are my go-to responses for when I don’t hear something. After 15 years of wearing hearing aids you would think I would be more comfortable saying, “I can’t hear you. Could you repeat that?” but at times I still find it challenging and awkward. It is not that I am ashamed of my hearing loss or my hearing aids. These things are a part of who I am, and I am proud of my identity. I think the challenge comes from years of training myself to pretend. It comes from living in a world that is often slow to accommodate and reluctant to understand. I put a lot of pressure on myself to single-handedly compensate for all the challenges my disability presents, rather than asking the world around me to be accommodating; and it is exhausting. Every task, every new situation requires a lot of thought. For example, walking into a new classroom on the first day of the semester, I am on high alert. Choosing the right seat is crucial — I have to think about positioning myself so that I can not only best hear my professor, but also be able to keep up with discussions that move around the room. I loathe seats arranged in rows because I can’t keep watch over the whole room without physically turning around. What if someone behind me tries to talk to me and I don’t hear them? What if they think I’m ignoring them? These are the worries that plague me. In the moments where the classroom is filling up but still professor-less, some students lean back in their metal chairs, thumbs scrolling through Facebook feeds, bright screens illuminating bored faces. Others chat with friends, contributing to the rising background noise of indistinguishable sounds humming in my ears. These students are relaxed, carefree. Meanwhile I am always attentive, constantly scanning the room to ensure that my observation skills will catch what my ears won’t. I worry that if I miss something, people will take me for being rude or incompetent. If something is directed my way, I practically fall out of my seat to close the gap between myself and the speaker. I could ask them to be louder, but sometimes that doesn’t even occur to me. I alone feel the pressure to make it work. The weight of this responsibility feels tight in my chest and my nervous shoulders rise toward my ears; I shrink into myself. There’s a term for these feelings and experiences. I recently learned it from an Ai-Media video posted by Deaf activist Artie Mack. The term is “Deaf Anxiety.” In his video Artie talks about many of the things I just described. When I first watched his video “Let’s Talk About Deaf Anxiety,” I felt like he could be speaking about my own experiences for me. Having something that I’ve dealt with my whole life but never seen vocalized before made me feel vulnerable and validated all at once. It also made me wonder: Why this was my first time hearing the term Deaf Anxiety? I’ve spent a significant amount of time in the waiting rooms of audiology offices reading coffee table pamphlets about hearing loss, but I’d never once come across this type of anxiety. Yet, if Artie’s and my experiences are so similar, that must mean that there are more hard of hearing and D/deaf people out there who have experienced the same thing. So why isn’t anyone talking about it? Why is isn’t anyone doing anything about it? After watching the video, my feelings of vulnerability dissolved into ones of curiosity. I pulled up a new tab and seconds later my Google search revealed to me that 11.5 percent of people with hearing loss report experiencing depression (Packer). If that number seems high to you, you’re right. It’s over twice as much as the percentage of the hearing population with depression — 5 percent. Again, staring at this statistic, I couldn’t help but wonder why this issue hadn’t been brought to my attention before. Audiologist offices seem like a definite place to start addressing this disparity, but I want to be clear that I do not view hearing loss itself as the problem here. Creating a more accessible and understanding world could help alleviate some of the anxiety the hearing loss community experiences. I hope by sharing my own perspective I can contribute to the visibility Artie Mack first brought to this issue. As a child, I was excessively private. My parents often teased me about being “strung too tight,” for always obsessing over perfection. I now wonder if some of these “personality quirks” were manifestations of D/deaf anxiety and depression. I can’t help but wish I would have known this term earlier. It would have provided relief to know I was not alone in my experiences, that my feelings were legitimate. I wish that as a child with hearing loss, when I was being taught to read lips and to clean my hearing aids, I also would have been taught to cope with mental health stresses.

Angela Molloy

How Disability Theology Addresses Societal and Internalized Ableism

We’ve all heard the familiar condescension. “I know you think you’re a smart girl, but I’m the doctor.” “It can’t be that bad – stop being a martyr.” “You look healthy.” “You’re too young to be in that much pain.” “You’re too complicated – there is nothing else I can do to help you.” “Just wait until you’re older and doctors do things to your body you don’t want them to.” “Aren’t you better yet?” …as if we’ve forgotten the definition of chronic. Living with five chronic illnesses – four physical, three congenital, none my “fault” – I am forced to battle societal and ingrained ableism every day. Sometimes the remarks are subtle, and even I don’t see the ableist undertones right away. More often, I continue to be harmed by well-meaning people who insist if I “had more faith” or “prayed more” I would “get better.” Not only does this cause harm by blaming me for my chronic illnesses, it is also terrible theology, cherry-picking verses from holy text out of context to justify the ableist bias that my divergence from the “normal” able-bodied person is “wrong.” I continue to be harmed by well-intentioned people who think they are helping or giving me a compliment when they say I “look healthy” or I’m “too young to be sick.” I am beginning the third term of my first year of Theological School. This means that for almost eight months I have been blessed to learn alongside students and faculty from diverse religious and academic backgrounds who each experience a wide range of intersecting privileges and oppressions because of their identities. Theology is broadly defined as the way we seek to connect with something greater, the lens through which we understand Mystery given our embodied reality in this world. There are many different types of theology – Liberation Theology, Process Theology, Systematic Theology, Practical Theology, and on and on – because each is formed from our lived experience in a world that values “normal” and punishes all who divert from this false standard. I am finding immense healing in the lens of Disability Theology and have hope for its significant potential for combating both societal and internalized ableism. Disability Theology is giving me the tools to resist ableism in all forms by deconstructing the ableist lie that disability is something to be “fixed,” a problem to be “solved,” a “choice,” or a “consequence of sin.” By connecting to the Divine through this theological lens, I am able to reclaim my relationship with the Holy Spirit – who is all too often held up as the great Healer of able-bodied people while attacking disabled bodies – as an entity who fully loves diverse bodies and does not desire to “fix” me or any of my disabled siblings because we are fully loved as we are. We are already both holy and whole. There is no need to “pray harder” to be “healed.” Rather, I can pray for more low pain days than high, recognizing the reality that I do experience pain daily and refusing to submit to the ableist refrain that if I “had more faith” God would heal me. God made me and my diverse body, and God does not seek to change it because there is nothing “wrong” with disabled bodies. I am not “being a martyr” by recognizing my lived reality – it is more than OK to speak about life with chronic illness. In her book “The Disabled God,” Disability Theologian Nancy Eiesland makes our bodies the starting point and reminds us that we do not “overcome disability and the body pain that it entails” but rather we come to our bodies “tolerating its limitations and doing what [we] can.” Disability Theology emphasizes that social attitudes and ableist institutions are the problems, not our nonconventional bodies. Here, we fully participate in the world through, not in spite of, pain and we are able to “discern in our bodies, not only the ravages of injustice and pain, but also the reality of surviving with dignity.” Empowered by this embodied theology, I commit to speaking up about what it’s like to live with invisible disability in order to deconstruct the narrative that the only “real” disabilities are visible. I commit to talking about disability without feeling guilty for how it makes able-bodied people uncomfortable because it is more than OK to speak about my lived reality. I am proud of the compassion I have been able to show to my present self and to younger versions of myself who received new frightening diagnoses and were afraid to live fully in my beautiful disabled body. Though she still lives inside of me, I am no longer that 5-year-old child who was told her very real symptoms “did not exist” but were simply “all in her head.” I am no longer that 16-year-old kid who, after a decade of gaslighting, was stereotyped for an official diagnosis and constantly watched as if she were going to explode. I am not that 18-year-old forced to delay beginning college to have brain surgery, convinced by doctors that this one surgery would magically fix everything, and I am not the 20-year-old girl forced to travel 3000 miles to advocate for treatment after over a dozen local doctors failed to provide more than painful medication side effects. All of these identities are real, and I have growing compassion for these young girls who live inside of my soul, but I am no longer ashamed of my disabilities. I do not feel the need to hide them. My illnesses do not define who I am, but they often define what I can do, and in this capitalist, ableist world we are judged by what we can do. I cannot resist the ableism inherent in this judgment if I do not reckon with my own internalized ableism, the pressure I put on myself to do more and to believe that my value comes from what I am able to do. Disability Theology is a refreshing perspective in our disability-fearing world and is an essential reminder that all bodies, with our many beautiful, frustrating, painful differences, are profoundly loved. You are holy and whole, dear ones. Exactly as you are.

Olivia Tocci

The Christian Church Needs to Do More to Support Mental Health

As you may know, Ariana Grande donated millions of dollars to partner with BetterHelp (an online counseling service) as a way to provide a month of free therapy for anyone who needs it. Therapy has been a topic of discussion within my family for years now. My 8-year-old son is autistic and ADHD, and my 10-yea-old daughter struggles with anxiety. Luckily they qualify for our states free health insurance, so they are both in therapy! But my husband and I don’t qualify due to our income. However, as we all know, making too much money to qualify for free healthcare does not necessarily mean you make enough to afford therapy. Therapy is extremely expensive. I get it, and I am in no way disrespecting the level of education or knowledge that is required to provide these types of services. What I have a problem with is health insurance not doing a better job at supporting mental health in the same ways they do physical and medical health needs. The risks of not receiving proper mental health support, can be just as devastating as neglecting to receive medical treatment when needed. In the past few years my husband and I have gone through a lot – personal, family, and even within our marriage. Our need for therapy has left us anxious and frustrated due to our inability to afford it. However, recently we decided to have my husband do therapy through BetterHelp because it is an affordable option and allows you the flexibility to engage with a therapist through messaging or video chats. Due to his unhealed childhood trauma, it made the most sense for us to make space in our budget for him to have therapy over me – at least for right now. But if I’m being honest, neglecting my own needs has been my entire life story. I’m tired. I’m drained. When do I get that type of help and support? So when I found out that Ariana was giving away a free month of therapy, I quickly jumped on it! (to receive this go to www.betterhelp.com/ariana). If you’ve done BetterHelp before then you know that even after you stop doing it, you continue to receive journaling prompts based on your past engagement with a therapist. And in one month of therapy you absolutely can receive helpful tools to guide you through future issues surrounding the problems you discussed. I think we should all be able to agree this is an incredible thing she is doing. I think it’s incredible because no one else is doing it… including the church. And maybe you’re thinking “or we could just have free health care,” haha. Well. That’s an entirely different conversation. All I’ll say on that is I do believe the health care system is messed up and needs reform. But I also believe the church was created to step in when society and the world is just that — messed up. I truly believe that the church is losing people and will continue to, as it goes down the path of performance over people. Why do I bring that up? Because both my husband and I grew up in the church, so we know first hand. When I found out that someone was using their platform as a way to support people who need this kind of help, I thought to myself “why is the church not using their platform to support people who need this kind of help?” In some ways what Ariana is doing for people who are suffering mentally and emotionally, is more than what the church historically has done, and we need to be talking about it. I’ll start off by saying that this is not an accusation against all churches, but just my thoughts based on personal experiences and what I know about churches overall through growing up within Christian culture. I am 35 years old and have been attending church since I was born. One thing I have noticed is that the church is constantly asking people to step into roles that require them to invest in others, without them being invested in themselves. This leads to burn out and certainly never produces healthy leadership. For example: In the past my husband has been a worship leader who invested many years and hours into it, but yet he never had anyone offer to invest in him on a deep level. Asking people to pour out so much of themselves and their time, without offering them a way to be filled back up, is toxic. Churches will passionately ask people to volunteer, or will scramble to fill in the gaps if the drummer cancels last minute for a Sunday morning service, but won’t put in that same diligence when someone reaches out needing someone to talk to. So when we talk about mental illness and the church, we can start right there. If this is how a church treats their leaders and volunteers, that’s an indicator they aren’t going to have the appropriate support for people with deeper needs. At a previous church I attended, I reached out to a woman who I had a connection to in several different aspects. She was older than me, and I looked up to her spiritually. My husband and I were having some challenges within our marriage and I wanted to know if she could provide us with any support. She then referred me to someone else in our church who she said had provided marriage counseling before. When I reached out to that woman, she literally just referred me to several therapy centers that she knew of in the area. I was confused… isn’t this a church? Why should my husband and I seek outside counseling when we attend a church filled with leaders? This is not to put down those two women, but just to prove the point that there was nothing set up within the church to support people in that way. I’m sure there are churches out there doing a better job than this, but I know that my own experience sadly isn’t the only one out there. Nowadays we have people within churches becoming life coaches and certified in things like spiritual direction, and some of them are charging for their services! And I’m OK with the fact that the church pays pastors and other full time positions within the church, but when the church is basically paying someone’s mortgage, then you know that we have strayed far from the mission of Jesus. This is not what the church is supposed to be. Jesus said to make disciples, not money. Ariana is famous and therefore has the money to do something like that, yes. But the church is also “famous” and has money constantly coming in as well. My husband and I should not be asked to tithe, but then be expected to pay for counseling outside the church. I said what I said. And don’t even get me started on all the mega churches that could literally be sponsoring handfuls of people to get the mental health services they need — because some people really do need professional help. Therefore I do not think that all matters can or should be dealt with by someone within the church. But when they can’t, is the church ready and equipped to support that individual financially in some capacity if they need? So all in all, what I’m saying is I think there are two very specific ways that the church can do better: Model actual discipleship, and then also find ways to financially give back to mental health services as a way to support people within the community. I don’t know what goes on in every church, and I imagine there are many out there handling all of this in a more Christ-like way. But all I know is that when I heard about what Ariana was doing, I was immediately frustrated. Why is a pop singer feeling led to do something so bold that the church has yet to consider? If you are a pastor or a church leader reading this, I am going to encourage you to honestly ask yourself if you think your church is doing all they can for the people in your community who are battling mental illness or just emotional stress of any kind. These are things to consider when famous people donate 5 million dollars into a crisis that the church is time and time again unequipped to handle. People are hurting, and churches need to do better.

Community Voices

Same or different?

Are the concepts of tolerance and acceptance the same? Are they related? Can you have one without the other? How are they different? Is one healthier than the other?

Community Voices

And it keeps going in circles

I've been a SPED teacher for 20 years. I also claim a disability as my own since I was in school as well. I am trying my best to change the paradigm of SPED and my students. But it is so frustrating when I continue to hear from my some of my colleagues "It is always the SPED students who... (insert something the kids should not do.). I've changed a lot of attitudes (I think). But some people continue with ableist comments. What to do?
#SpecialEducators

Stacey Gagnon

Today Hurt, Please Teach Your Children About Differences

Today hurt. We went to a new church because our oldest son was speaking about his camp experience. The church dismissed for children’s church and I walked my three youngest to the children’s room. As we walked in the room, there were four tables full with kids. The minute we walked inside, the room became silent and every child stared or pointed at my son, Joel. Joel was born with a cranio-facial impairment. He is missing an ear and some bone structure. I know he looks different, but today hurt. I stood at the door and watched every child look with eyes wide and mouths open at my child. I stepped in and was about to address the entire class about differences; but then I stopped. I stopped and looked to the back of the room where my son fled to hide. He had buried his head in his arms because you cannot hide in plain sight. My heart sank and the room remained silent as I walked back to Joel. I touched his shoulder and he raised eyes shiny with tears and a face red with shame. I knelt down and asked, “Do you want to leave?” “Yes,” he whispered, and he stood and ran from the room. I held him in my arms during church and he wrote, “Joel loves Mom” on my palm. Tears welled in my throat. My beautiful and loving son deserves so much more than stares and pointing. And I thought about what I didn’t do in that room today. In the past, I have always stepped into the role of teacher to educate kids. This has happened before, and I would step in and talk about differences, but today I did not. Today, I did not teach someone else’s kid because I was too busy holding my broken-hearted son.   So I ask all parents this: teach your children. Teach your children that many people look different. Show them pictures of people who look different. And then explain that it is not OK to stare at someone who looks different, it’s not OK to point. Teach them that my boy is the same on the inside as your child is. He loves “Dodge Ram” trucks, and “Minecraft” and digging in the dirt. He loves ketchup, but does not love broccoli. And mostly, he does not like people staring or pointing out that he looks different. I don’t think he needs this pointed out, it’s something he lives with every day. I am not angry. I do not think these were bad, mean children. I think no one has ever taught them. And so I am asking you to take a moment tonight and talk about what to do when you see someone who looks different. Show them pictures of people with different colored skin, different eyes, different abilities to talk, walkers to walk, wheelchairs to roll. Show them children with no hair, without an ear, without an arm. Take a moment and share all kinds of different. Teach your child that a beautiful person is found with the heart; not the eyes. We want to hear your story. Become a Mighty contributor here .

Stacey Gagnon

Today Hurt, Please Teach Your Children About Differences

Today hurt. We went to a new church because our oldest son was speaking about his camp experience. The church dismissed for children’s church and I walked my three youngest to the children’s room. As we walked in the room, there were four tables full with kids. The minute we walked inside, the room became silent and every child stared or pointed at my son, Joel. Joel was born with a cranio-facial impairment. He is missing an ear and some bone structure. I know he looks different, but today hurt. I stood at the door and watched every child look with eyes wide and mouths open at my child. I stepped in and was about to address the entire class about differences; but then I stopped. I stopped and looked to the back of the room where my son fled to hide. He had buried his head in his arms because you cannot hide in plain sight. My heart sank and the room remained silent as I walked back to Joel. I touched his shoulder and he raised eyes shiny with tears and a face red with shame. I knelt down and asked, “Do you want to leave?” “Yes,” he whispered, and he stood and ran from the room. I held him in my arms during church and he wrote, “Joel loves Mom” on my palm. Tears welled in my throat. My beautiful and loving son deserves so much more than stares and pointing. And I thought about what I didn’t do in that room today. In the past, I have always stepped into the role of teacher to educate kids. This has happened before, and I would step in and talk about differences, but today I did not. Today, I did not teach someone else’s kid because I was too busy holding my broken-hearted son.   So I ask all parents this: teach your children. Teach your children that many people look different. Show them pictures of people who look different. And then explain that it is not OK to stare at someone who looks different, it’s not OK to point. Teach them that my boy is the same on the inside as your child is. He loves “Dodge Ram” trucks, and “Minecraft” and digging in the dirt. He loves ketchup, but does not love broccoli. And mostly, he does not like people staring or pointing out that he looks different. I don’t think he needs this pointed out, it’s something he lives with every day. I am not angry. I do not think these were bad, mean children. I think no one has ever taught them. And so I am asking you to take a moment tonight and talk about what to do when you see someone who looks different. Show them pictures of people with different colored skin, different eyes, different abilities to talk, walkers to walk, wheelchairs to roll. Show them children with no hair, without an ear, without an arm. Take a moment and share all kinds of different. Teach your child that a beautiful person is found with the heart; not the eyes. We want to hear your story. Become a Mighty contributor here .

Stacey Gagnon

Today Hurt, Please Teach Your Children About Differences

Today hurt. We went to a new church because our oldest son was speaking about his camp experience. The church dismissed for children’s church and I walked my three youngest to the children’s room. As we walked in the room, there were four tables full with kids. The minute we walked inside, the room became silent and every child stared or pointed at my son, Joel. Joel was born with a cranio-facial impairment. He is missing an ear and some bone structure. I know he looks different, but today hurt. I stood at the door and watched every child look with eyes wide and mouths open at my child. I stepped in and was about to address the entire class about differences; but then I stopped. I stopped and looked to the back of the room where my son fled to hide. He had buried his head in his arms because you cannot hide in plain sight. My heart sank and the room remained silent as I walked back to Joel. I touched his shoulder and he raised eyes shiny with tears and a face red with shame. I knelt down and asked, “Do you want to leave?” “Yes,” he whispered, and he stood and ran from the room. I held him in my arms during church and he wrote, “Joel loves Mom” on my palm. Tears welled in my throat. My beautiful and loving son deserves so much more than stares and pointing. And I thought about what I didn’t do in that room today. In the past, I have always stepped into the role of teacher to educate kids. This has happened before, and I would step in and talk about differences, but today I did not. Today, I did not teach someone else’s kid because I was too busy holding my broken-hearted son.   So I ask all parents this: teach your children. Teach your children that many people look different. Show them pictures of people who look different. And then explain that it is not OK to stare at someone who looks different, it’s not OK to point. Teach them that my boy is the same on the inside as your child is. He loves “Dodge Ram” trucks, and “Minecraft” and digging in the dirt. He loves ketchup, but does not love broccoli. And mostly, he does not like people staring or pointing out that he looks different. I don’t think he needs this pointed out, it’s something he lives with every day. I am not angry. I do not think these were bad, mean children. I think no one has ever taught them. And so I am asking you to take a moment tonight and talk about what to do when you see someone who looks different. Show them pictures of people with different colored skin, different eyes, different abilities to talk, walkers to walk, wheelchairs to roll. Show them children with no hair, without an ear, without an arm. Take a moment and share all kinds of different. Teach your child that a beautiful person is found with the heart; not the eyes. We want to hear your story. Become a Mighty contributor here .

Community Voices

How do you feel about your birthday?

<p>How do you feel about your birthday?</p>
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