Why North Carolina's HB2 Hurts People With Disabilities, Too

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I am sure by now most people are aware of what is happening in North Carolina. The state’s new law, HB2, prohibits people identified as transgender from using the bathroom of their preference, and requires them to use a restroom based on the gender they were assigned on their birth certificate.

For me this issue is simple. Please let people go to the restroom in whichever one makes them comfortable. This bill is based on nothing but hate. Just let people pee and wash their hands of it (a little restroom humor). There are many people with disabilities in the transgender community. They should be allowed to use the bathroom that fits their needs, and so should I.

You may ask yourself, why I am taking the time to write an article like this on a site about disability? Today I read an article about the restroom issues facing the disabled community, and how we should be focused on “this instead of that.” I think we should recognize that this event in history is an opportunity to open up meaningful dialogues about appropriate restroom accommodations and modifications for all. We need to take this time to support, engage and teach others about what could make life easier—in the restroom.

Even if you can’t relate to the struggle facing the LGBT community, can you relate to the sheer embarrassment of going into a restroom that makes your life harder instead of easier? There are restrooms I cannot use because they aren’t made to accommodate me. Why shouldn’t we all want the right to be accommodated?

As a young adult who uses a walker and wheelchair to get around, restrooms have
always “fallen short” of my expectations, and sometimes created more issues than solutions. The stalls are cramped, the one accessible stall seems to always be in use, and there’s never enough room to turn my walker around. There are also people who have caregivers and loved ones of the opposite sex who assist them in the restroom. Does this mean a person with a disability in North Carolina will not get the care they need in the restroom?

I have felt embarrassment in restrooms because they don’t have stalls that are accessible in rural Iowa. Sometimes, accidents can occur, and I am not afraid to admit that, but public restrooms need to do a better job of accommodating and modifying for the human beings that use them, so no one should feel embarrassed when they use
a restroom. It makes me feel anxious, nervous, and angry for not being
able to use the restroom like everyone else.

I am not sure why there aren’t more accessible stalls, more stalls with hand rails, and generally stalls with more space. Everyone uses the accessible stalls anyway; why not just have better stalls for everyone? I think as a society we need to have everyone be part of this discussion. I am glad I live in a time where we can have open discussions about our restroom needs and continue to make strides to improve quality of life and overall happiness.

So start a conversation about your restroom needs today. Organize a rally, and encourage restroom awareness, because it’s obvious that restrooms need to change with society. Let’s always encourage compassion, understanding, and improvement when we are discussing restroom issues, whether it’s about LGBT or disability rights — or both.

Wheelchair accessible public restroom.

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5 Things I've Learned Since My Daughter With Disabilities Graduated High School

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girl in wheelchair attending graduation ceremony
Sue’s daughter at her graduation.

As my daughter, who has multiple disabilities which include seizures, approached her 21st birthday and graduation from high school, I didn’t know what to expect. I was very happy we both survived 18 years in a one-size-fits-all system. I was glad to be done with IEPs, yet a little scared of what life would be like without the predictability of the school schedule. Day programs and available services vary widely from area to area. Although I educated myself about our options before she graduated, I was afraid of what life would be like. Here is some of what I’ve learned since.

1. The most important thing you can do is network with other parents. I found this is the best way to find information about day programs, and opportunities for recreation and socialization. The center my daughter attends is good, but not perfect. The ability level and age range of the other participants is wide. My daughter is in her early 20s, and the oldest person in her program is in his late 70s. She enjoys going and there is enough to keep her interested, but she needs opportunities to socialize with her same-aged peers. We found an art program with participants in her age group, and this is where we are able to meet other parents. Social media is a big help in finding church programs and special events held in our area geared toward recreation and fun socialization such as game nights or dances. There are activities out there, but finding them isn’t always easy without the help of other parents.

2. Flexibility is necessary because routines can change without notice, especially in the morning. We were used to a very early pick-up time for school. The day program starts later and runs for fewer hours per day than school. One positive change is our later wake-up time. One negative is cutting back on hours at my job due to the increased time I need to care for my daughter before she leaves. Luckily my employer is flexible, so I wasn’t forced to find a new job, or stop working altogether. Also, the bus doesn’t always come at the same time. They do their best, but they are picking people up from all over the area, so if someone is not going that day, or isn’t quite ready when they arrive, they may be earlier or later than usual. We are fortunate that my daughter’s program includes transportation; not all programs do, which leaves parents doing the driving, carpooling, or hiring a car service.

3. I sometimes feel jealous of the freedom to come and go that some of my peers have. Most of my friends are becoming empty-nesters, free to have spontaneous weekends away or last-minute social engagements. I must plan everything in advance, such as who will be caring for my daughter, before accepting an invitation. My friends are very understanding and accommodating of my restrictions, but I still feel that little twinge of envy for their spontaneity.

4. Finding new physicians and health care facilities can be hard. I learned when searching for new doctors that the word “Medicaid” can close many more doors than it opens. At age 21, pediatric practices and the children’s hospital can no longer treat my child. I knew the time was coming, but I still wasn’t emotionally prepared. Adult practices are a different atmosphere from pediatric ones. Gone are the cheerful, colorful walls and cute animal pictures, smiling faces in the waiting room and cartoon character Band-Aids. Instead there are muted walls with framed landscapes, gauze and tape and somber, bored faces tired of waiting. I’m finding it hard to replace 20-plus years of trust I had in the doctors and their office staff. There’s no more instant recognition by the staff and doctor knowing my daughter’s history. It’s not so easy giving a brief synopsis of a complex medical history to someone on the telephone before getting to the current concern. For me, finding the right fit is exhausting, and time-consuming.

By aging out of the school system and doctor’s practices at the same time, a whole support system has been removed from our lives.  It takes time to build up confidence in a new approach to lifelong issues we’ve learned to handle a certain way. We are starting over, and those old feelings of self-doubt in decision-making I left behind many years ago have returned.

5. Life takes on a slower pace. Our days start later, and we have more free time. We are no longer going at the frenetic pace the school years induced. It’s not entirely a bad thing. I’ve learned to embrace this more low-key way of life. We have become creative at finding things to do that fit our daughter’s likes. She loves music, so we look out for local concerts in the winter and outdoor concerts in the summer. A walk at the park and a picnic is a pleasant way to spend a weekend afternoon in the summer and warmer days in the fall. I used to fear life after my daughter turned 21, but I have come to embrace it. I thought it would be sad and lonely, but it’s not; it’s just different and challenging in a new way. At the end of the day, my daughter is healthy and seems content, which is what the goal has always been.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Want People Who Stare at My Daughter in Her Wheelchair to Know

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My daughter Elizabeth’s chronic illness has opened our eyes to things we never would see or know otherwise. It’s led to witnessing a world unknown to most, an increase in compassion, and an awareness that can’t be put into words. Those are all some of the wonderful positive things brought about by an incredibly challenging situation.

One of the more difficult things on this journey has been how people look at Liz — both literally and figuratively — and how she is treated by others at times. There was the boy in her class who told her she was as white as a ghost and looked like a “cancer kid.” While wearing a mask in public at a time she was neutropenic, a senior citizen looked at her in disgust and, backing away, loudly asked, “What’s she got?!” Liz felt especially confused and embarrassed after that interaction.

Elizabeth - teenage girl using a wheelchair.
Allyson’s daughter, Liz.

Those incidents were unfortunate, but not as frustrating as our experiences now that Liz has used a wheelchair in public. Some of the experiences she has gone through, and that we’ve witnessed others dealing with, have been jaw-dropping. Recently, while at Disneyland, as Liz was being stared at and shoved by the crowds, we decided to make a little list to share.

I think that for people like Elizabeth, who appear “normal,” “typical,” or “without need,” assumptions are most hurtful. There’s a stereotype, especially at Disneyland, that some people selfishly choose to use a wheelchair because of convenience rather than due to need. But many people who are assumed to be lazy, or opportunists, or using a wheelchair only because they are overweight, have real reasons to need one. Some people are overweight because they are on steroids that cause weight gain and make mobility difficult. Then there are those like Liz, who have just enough energy to walk during their daily routines, but going to a mall or amusement park leaves them incredibly fatigued, in pain and even with fevers and vomiting due to their body’s reaction. Or people with heart conditions, or lung issues, or nerve problems… Bottom line, it’s not up to us to differentiate the lazy from those who need help. Assuming is unkind and unnecessary.

When my twins were young enough for a stroller, I had a monstrous double stroller that I referred to as the baby limo. Only 14 years ago, strollers weren’t made to accommodate twins, so a large steel piece had to be attached so that the second baby seat hung out over the edge of the stroller by about two feet. It was big, bulky and ridiculous to maneuver through tight spaces and in large crowds. Still, even having dealt with that kind of stroller and the rudeness of strangers, I’ve found that people treat wheelchairs with much less consideration than strollers. It has been eye-opening.

People may act as though they don’t see the chair and walk in front of it, over it, and without regard for the person — the human — who is in it. When you push against the chair, it is the same as pushing a person. While you pretend to ignore the wheelchair waiting to cross the street or enter a door, you are ignoring the person. The chair is an object, but there is a person in it who deserves the same manners and respect that we show those who are ambulatory.

People stare at my daughter in her wheelchair, yet there is no eye contact. Liz says, “Being in a wheelchair makes me feel unnoticed. It makes me feel lower than people, and not because of the chair.” She feels less-than, unequal, and unnoticed. If Liz feels this way during infrequent times of using a wheelchair, which she walks to and from on her able-bodied legs, it makes me wonder how those who use wheelchairs daily feel.

The past months of increased chair-use for Elizabeth have made our family more aware and given us an understanding we didn’t have before. I’ll no longer assume. I’ll easily allow for wheelchairs to pass. I’ll make eye contact with the person in the chair and smile. Join me.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Obama Will Forgive Student Loans of Almost 400,000 People With Disabilities

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The Education Department announced Tuesday it is taking steps to identify people who are eligible for the Total and Permanent Disability loan discharge — a federal loan-forgiveness program for people who can’t work because of a disability.

This effort is part of President Obama’s Student Aid Bill of Rights, which aims to make paying for higher education easier for Americans.

According to the Associated Press, Secretary of Education Ted Mitchell says too few borrowers have been taking advantage of the program. So, letters will be sent to about 387,000 people who the agency has identified as eligible.

“These are people who are struggling with health issues, “Mitchell said in an interview. “We want to take one worry off their plate.”

The total loans forgiven will be worth about $7.8 billion, the AP reported. Of the people who qualify, about 179,000 people have student loans in default.

The department will start sending out letters beginning Monday to those who are eligible.

h/t Business Insider

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How This Pageant Empowers Girls with Disabilities to Be 'Unstoppable'

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On April 2, 2016, I coordinated the Arc of Sedgwick County’s third annual Miss Unstoppable Pageant in Wichita, Kansas. After many years of volunteering with the Arc, I heard that the pageant’s founder was leaving, and knew it was a program I could not let disappear. The pageant is for girls with developmental disabilities ages 5 and up who want to show the world what makes them unstoppable. Each girl competes in interview, runway, talent, and evening gown to earn the title of Miss Unstoppable. Five girls were crowned in their age division, and one girl was crowned overall Miss Unstoppable. It’s not all about the crown, however.

In preparation for the pageant, the girls attended a fall and spring workshop where they learned interview skills, an opening number dance routine, and most importantly, how to advocate for themselves. Each girl was given a tiara worksheet at fall workshop in which they wrote what makes them unstoppable. From there, they learned that their disability does not define them, because they are unstoppable.

Miss Unstoppable Pageant contestants in evening gowns
Miss Unstoppable 2016 contestants

The former Miss Unstoppable 2015, Erica, spoke to the girls about what her year as Miss Unstoppable was like and why she believes all of her friends with disabilities are unstoppable as well. Erica served as a representative of those with disabilities and was even part of the #BeUnstoppable Campaign with her personal message: “No need to call me autistic, I prefer queen.”

Throughout the year the girls continued training and learning to truly appreciate everything they can do, instead of focusing on their challenges. All of the preparation led up to pageant day, where each girl received a state finalist award along with many other awards. The new Miss Unstoppable, Rebecca, was crowned Saturday afternoon. It was only fitting that she was crowned on April 2, Autism Awareness Day. Rebecca blew the crowd away with her talent as she performed a beautiful folk song on the violin with the piano accompaniment of her mother. Her smile and charm throughout the competition gave her the overall high score, and the audience roared when her name was called.

Woman with a disability wearing a tiara

When doing a quick interview after the pageant, she looked at the camera and said “I am not defined by my disability, I am unstoppable!”

The impact this pageant has on our contestants is astounding. I could tell many stories about what these girls have learned and experienced, but I will simply share one moment that truly sticks out from this year. During one of our contestant’s private interviews, I stepped in the room and told her she had 30 seconds to tell the judges any last thing she wanted them to know. Afterward, I heard her say to them, “If I am crowned Miss Unstoppable, I will show every person I meet respect, and tell everyone that they are unstoppable and not defined by their disabilities.” That is the moment I realized that the Miss Unstoppable Pageant was really making a difference. These girls truly believe they are unstoppable, and are confident enough to start telling others. The Miss Unstoppable pageant continues to change lives and leave an incredible message in everyone’s heart.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

 

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The 'Canoemobile' Makes National Parks More Accessible to People With Disabilities

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If you’re a person with or without a disability and you’d love to experience the thrill of the open water, the Canoemobile may be for you.

In celebration of the National Park Service centennial, the Canoemobile, operated by Wilderness Inquiry, will connect people with disabilities to the outdoors by getting them into canoes and out onto America’s great rivers and lakes. The Canoemobile, a fleet of 24-foot Voyager canoes, will be stopping across the country from April through October. The tour will stop at places such as Big Thicket National Preserve in Kountze, Texas; Indiana Dunes National Lakeshore in Chesterton, Indiana; Golden Gate National Recreation Area near San Francisco, Chesapeake & Ohio Canal National Historical Park in Hagerstown, Maryland, and more.

A person with a disability gets into a canoe

People of all abilities are welcome on Wilderness Inquiry’s fully integrated trips. They provide adapted seat pads, paddling equipment and other accommodations for people with physical disabilities. They can accommodate people who are blind or have low vision, and people with deafness or hearing loss. They also offer experiences geared towards people with intellectual disabilities to facilitate development of outdoor skills.

The Canoemobile tour is sponsored by travel and outdoor lifestyle apparel brand Toad&Co, whose sponsorship will send 1,000 adults with disabilities to 10 national parks in 2016. The grant serves as a launch pad to create access and inspire a connection to the outdoors. All adults with disabilities who participate in the Toad&Co sponsored Canoemobile tour stops will be encouraged to apply for a free National Park Service lifetime access pass granting admission to more than 2,000 recreational sites across the country.

“The centennial celebration is about introducing America’s incredible national parks to everyone, and we couldn’t be more proud to partner with Toad&Co and Wilderness Inquiry to inspire people with disabilities to find their park,” Susan Newton, senior vice president of grants and programs at the National Park Foundation, the official charity of America’s national parks, said in a press release. “Our National Park System has something for everyone, and we are excited to help people discover accessible experiences that speak to their personal interests and passions.”

For more information or to sign up for an event near you, visit the Canoemobile website.
Canoemobile

The Mighty is asking the following: Share a travel moment related to disability and/or disease that made you laugh, cry, roll your eyes or was otherwise unforgettable? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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