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Monday, October 18, 2021
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Kids and Disabilities

Dignity and Respect for All 

Perhaps the biggest commonality we as individuals have with those around us, is that each one of us are a unique and multifaceted creation. We each face our own struggles, harbor our own strengths, cultivate our own interests, and acquire our unique perspective of the world around us based on our own experiences. 

Differences are a part of life and they are something to be aware of, learn from, to respect, adapt to, and even celebrate. This piece is meant to shed light on the millions of Americans including those in our own communities who live with disabilities, differences, and chronic health conditions of all kinds. 

Even among those living with differences and disabilities, there will be a wide variance among lifestyle, ability, and impact based on the intersectionality of their identities and the specifics of the difference, health condition, and/or disability they live with. 

Breaking it Down 

A disability can be defined as a condition that to varying degrees impairs an individual in some manner. Disabilities can include physical impairment, sensory impairment, cognitive or intellectual impairment, mental health struggles, and chronic diseases or health conditions. 

To break things down further, disabilities vary widely and may include things like spinal cord disabilities, head injuries, vision impairments, hearing impairments, learning disabilities or differences, psychological disorders, and other invisible disabilities such as chronic pain, lyme’s disease, diabetes, sleep disorders, trigeminal neuralgia, and IBS just to name a few. 

Differences include anything that sets one apart from a standard subset of a population. Differences can include things like congenital limb differences, skin conditions such as vitiligo, or psoriasis, or craniofacial differences affecting the head and face. 

Chronic health conditions can also vary greatly and are nearly innumerable, but can include things like cancer, diabetes, obesity, arthritis, heart conditions, asthma, kidney disease, autoimmune disorders, and Alzheimer’s. 

Person First

Every individual is different and every individual who lives with a difference, disability, or chronic health condition will have their own preferences and desires regarding how they are spoken to and referred to in conversations and interactions. Widely speaking, as a society we should strive to use person first language when referring to someone living with some sort of disability or difference. 

Person first language strives to view and refer to the person for who they are rather than associate them solely with their disability or difference. Putting the person before the disability helps ensure that the focus is on the individual. This approach serves to describe what a person “has” rather than make the disability or difference seem like the sole identity of who the person is. Simple changes in phrases such as “person with a disability,” as opposed to phrases such as “the disabled person” shift the focus to the individual. Referring to someone as an individual with autism, an individual with diabetes, or an individual who uses a wheelchair are person first approaches whereas an autistic individual, a diabetic, or a wheelchair bound person instead put the focus on the disability, difference, or condition. 

The best way to find out how someone likes to be referred to or how they like to refer to their specific disability, difference, or condition is to simply ask. This goes for offering help and assistance as well. Many individuals in the disability community pride themselves on their ability to adapt and their sense of independence. Not all people were born with the disability they are currently living with and it can sometimes be a source of frustration for people to assume that they are always in need of assistance. This is not to say that we should not be kindhearted people with good intentions who offer assistance to others regardless of disability status, however phrasing questions such as “may I offer assistance?” or  “would you like help with that?” are good to ask prior to offering unsolicited assistance. 

Disabilities and differences are not contagious. Sometimes young children fear those with disabilities or differences because they don’t want to “catch” what they see. As parents and caregivers, we can help children understand that differences and disabilities are not illnesses and cannot be caught like a virus.

Personal Stories

I myself was born with a limb difference that affects both of my hands, while it does not  hinder my daily life other than not being able to get a manicure, having sloppy handwriting, or not being able to easily find gloves that fit, I did have to undergo numerous surgeries and growing up it was often the first thing peers noticed about me. 

I was severely bullied in school but fortunately for me, several members of my family have the same condition so I had a large support system to help navigate the issues that arose. As an adult I use my own experience now to help my children understand that our differences do not define us, our words, our outlook, our personality, and our character do!

Ashlyn Barrett is 11 years old. She also has Type 1 Diabetes. She says “This means my pancreas can’t produce insulin anymore so I have to have shots or use an insulin pump.” When asked about her pump she says, “My omnipod has a ton of cool features. To dose for food all I have to do is just put in how many carbs my food has and what my blood sugar is and it will calculate the amount of insulin I need. My pump also pumps insulin regularly throughout the day to keep my blood sugar stable. When my blood sugar goes low, I can suspend the insulin that goes in regularly so it doesn’t play a factor in making my blood sugar go lower.” 

Ashlyn says that she does not mind when people are curious and encourages them to ask questions as long they do so in a way that is kind and respectful. She does wish that more people were educated on what Type 1 Diabetes really is and what it is like for those living with it.  She says she often gets frustrated when the disease is stereotyped or when people spread misinformation. All things considered she considers herself very lucky saying “my disease doesn’t impact my childhood because of the advanced technology that has been invented.”

Laura Crowley Anderson became disabled as an adult after a catastrophic fall. She now suffers from complex regional pain syndrome which affects her quality of life in a myriad of ways. She found it shocking just how much insurance will not cover in terms of treatment and adaptable equipment. While she has found ways to do the things she still enjoys such as working out with a personal trainer and physical exercise that she has long enjoyed, she does find that some of her favorite locations she enjoyed frequenting pre-disability, such as the historic streets of downtown Annapolis are nearly impossible to navigate with a walker. 

Despite the chronic pain and hindrances she finds joy wherever she can saying “I listen to my body and I still find ways of doing movement to the best of my ability. In a way, my disability has made me stronger. My life has gotten smaller, my circle more defined, but the quality of my friendships and relationships is the best it has ever been.” Laura says that she does feel some pangs of sadness that her disability caused her to miss out on some of the major milestones in her children’s lives. She says that she does wish more people took time to reflect on what it is like for those who live with chronic pain and disabilities. “I don’t know” she says, “sometimes I just feel like I don’t quite fit into the world anymore.” She encourages us all to pause and think about our friends and neighbors who are living with disabilities. “When you invite people to do things or plan events or outings, start with the basics. Think about the logistics involved and try to be inclusive and accessible to those around you with disabilities.” 

Working with Individuals with Differences or Disabilities

When working with individuals who are living with disabilities or differences it is important to focus on their strengths and to view them as unique individuals with autonomy and self worth, just as we would with anyone else. 

Jenn Miltenberger is a Direct Support Professional for an agency serving adults with Traumatic Brain Injuries. One of the greatest lessons she has learned while working with this population is to always show empathy. “I have not been in their shoes and I can’t possibly understand what my clients have gone through but I am here to listen.” 

Listening is one of the greatest signs of respect Jenn can show to her clients. “These individuals strive to be a part of the community,” she says. “They enjoy being talked to and are encouraged to advocate for themselves. One of the challenges these individuals often face is people not talking to them directly or talking to them in higher tones like they’re children. I encourage my clients to speak up for themselves because they can.” She says that many people tend to be shy around people with disabilities and she encourages us all to reach out, to listen, to ask questions, to say hello, and to get involved. “My clients love attention just like many people. They enjoy when people notice them. They’re usually open to telling you their life stories and what they want for the future.” 

Jenn reminds us that everyone’s experience with a disability is different and we need to honor their individuality and their preferences. “Many of my clients had a whole life prior to their injury or accident, and a lot of that gets taken from them. I have a client who likes to talk about what he did “before.” I honor those conversations. She says that no injury is alike. “Depending on what part of the brain has been injured, there can be an assortment of different health issues. I have clients who just have physical disabilities, clients with behavioral issues, and some who have memory impairments. All of the care has to be very person-centered.”

Disabilities and Differences in Schools

Many children are first exposed to peers living with disabilities and differences when they begin attending school. It is important that we help our children understand that all of our peers are worthy of kindness, compassion, respect, and inclusion. Lisa Schmidt is a local elementary special education teacher in Anne Arundel County. She attended George Washington University where she received her master’s degree in Special Education with a focus on emotional and behavioral disabilities. She says that the role of a special educator is to find ways to make school accessible for each student which often means utilizing different methods for each student. 

Lisa says that many of the challenges that children with special needs face in school are the same types of academic challenges experienced by their peers. “They can have academic, communication, social and emotional challenges. As a teacher in an elementary school one of the biggest challenges is learning about a student’s strengths and needs. Many children aren’t identified with special needs or disabilities until they reach school age. Parents and teachers are the students’ advocates to ensure their needs are identified.”

Lisa encourages parents to talk openly with their children about disabilities and to lead by example. “Children and adults are curious about other people and asking questions about others helps us learn about our similarities and differences. The biggest thing I wish everyone would understand is that students with special needs are all individuals.  There is no one size fits all solution to any child or challenge.”

Compassionate Curiosity and Authentic Inclusion

One important thing to remember when interacting with others is that not all differences, health conditions, and disabilities are visible. It is often impossible to tell simply by looking at someone to know for a fact if they are living with some sort of difference or disability. Hearing impairments, learning differences, intellectual disabilities, personality disorders, spectrum disorders, and other conditions are not visible. This is why we should always make an effort to get to know those around us and to understand what our friends, peers, neighbors, and community members are experiencing or living with on a daily basis. 

When it comes to visible disabilities, one of the most important things to remember is that people are people regardless of their differences or levels of ability and we should strive to treat everyone we meet with dignity and respect. Lack of knowledge or understanding is nothing to be ashamed of. Curiosity, especially in children should never be diminished. Asking questions in a respectful manner and approaching questions about disabilities from a place of compassionate curiosity helps ensure that we seek knowledge and understanding from others in a way that is respectful and considerate rather than leaving them feeling as though they are a spectacle or mere object of interest and intrigue. We must all strive to be inclusive, understanding, and compassionate towards all we meet. 

article written by: Jillian Amodio

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