To create hope for change. Disabilities are rising in society. We have future leaders in colleges. We need to excite them to lead change. People with disabilities have rights. We should help them reach those rights. We need to advocate for change in the public. I would like the public to learn more about disabilities. Everyone has a voice.
Hey, my name is Sara. I’m Autistic. I have other Disabilities too. I like to say a laundry list of them. I’m going to talk about Autism and grad school here. And why I’m going. And how long it took me to get a regular college degree, and why.
I’m scared. I feel like graduate school will be a next level to regular college. I have trouble with organization. I have trouble with time management. Depression makes me tired and low energy.
I have already been talked to about going off topic in class in the first week. It wasn’t really off topic. The rest of the class and the teacher can’t see the patterns I see and how all of it was connected. I think another Autistic would have. The teacher was nice about it.
A classmate talked to me too. I thought she was being nice, then I wasn’t sure. I took it as I heard it, and then I started to wonder. Was it about my ‘lack of social cues’ or about their lack of comfort? The thing about Autism is I can’t know which it is. If I asked, would people tell me the truth or not? Thinking about this kind of tiny little social lie makes me crazy. It feels like betrayal to tell them. But people do it all the time. I can’t tell them or know when to tell them or when not to. Wouldn’t it be better if we all just didn’t? How is it polite? Makes me feel even more apart.
When I get in to school early, I take time to separate off and play simple games on the iPad or iPod to relax my mind and be less affected by lights and sound. So I can have enough energy reserved for getting through classes.
The next week, I got things said to me I’ve heard before, but are never easy to hear and are never cool. I hate hearing them. They make me feel not.
Not Autistic enough.
Not Disabled enough.
I don’t need help.
I don’t need support.
I don’t
Not as much as others, so it doesn’t
Life isn’t a competition. It hurts even more because my mother always compared my and my brother’s levels and types of Disabilities. If you don’t ‘look Disabled’ or ‘act Disabled’ then you always seem to get doubted, and people get mad at you. Like there’s a pot of Disability to reach into and smear across your face.
I wish my child was able to do all you can.
You need to understand not everyone is like you.
My child is so much more
My child is much lower
If my children could just sit there, their lives would be amazing.
Way to suck the worth from my life. I am not here to be compared to. I am a person all on my own. This needs to be. I need to be. I am made less human if not. I wrote a poem about all this.
Here. This video will help. It’s called “Shit Ignorant People Say to Autistics.” Maybe you can relate. I love this video. It always makes me laugh and nod along.
I am a public health researcher. My interest is in how disability affects people all over the world. In the U.S., many doctors and teachers know a lot about autism. Every day we learn more about how to care for people with autism. We are learning to value their strengths. Many students with autism learn in regular classrooms. Many movies and books discuss autism. In the United States, autism is seen, heard, and talked about.
People with autism live all over the world. In many places, there is little known about it. In some cultures, there is not even a word for autism. Molly Ola Pinney started the Global Autism Project (GAP) to spread global awareness. She started it when she lived in Ghana, a country in West Africa. In Ghana, people often believe that evil spirits cause autism. Because of these beliefs, families often keep autism a secret. These families feel very alone. GAP aims to provide people with accurate facts.
Almost 60 million people with autism live in developing countries. GAP is building a global network of people who understand autism. It trains therapists, teachers, and families all over the world. It helps people create autism programs in their own cities and towns. The goal is to integrate people with autism in their own communities. Here are some real life examples of GAP’s work:
Legendary singer and activist Nina Simone believed that the role of artists goes beyond the art they create: “How can I be an artist and not reflect the times? That to me is the definition of an artist.” This idea came to life during the 2016 Grammy Awards ceremony when Stevie Wonder called for people of the world to “make every single thing accessible for every single person with disabilities.” While the American’s with Disabilities Act (ADA) outlaws discrimination against people with disabilities, there are still many areas of life that are inaccessible, including the digital world. Bias and negative attitudes continue to create barriers and limit expectations of what can be done to make a difference. So, what can we do? Being a reflection of the times is not just an artist’s duty, it is a responsibility we all share. The stuff we buy, the people we vote for, and the topics we discuss help to influence decision makers in government and business. In response to Stevie Wonder’s challenge, Chester Goad suggests 6 steps that each person can take. These are:
(1) pay attention(2) be educated and educate others(3) be proactive, not reactive(4) avoid labels of “inspiration”(5) understand that disability is diversity(6) vet your creations.
One important opportunity for educating yourself and others is World Usability Day. On November 10th, 2016 advocates, students, professionals, government officials, and leaders will exchange ideas and showcase products with the goal of creating more user-friendly experiences in all areas of life, including education and technology. This year’s theme is sustainability. Just as Earth Day shows the world that the environment matters, World Usability shows the world that accessibility matters and that it is an important part of creating a sustainable future.
For more information about user experience (UX) design and Elizabeth Rosenzweig, the founder of World Usability Day, read Successful User Experience: Strategies and Roadmaps.
As a person who has used a service animal for just over 15 years, I can tell you I get stopped constantly and asked a lot of questions. I once even got stopped by Bill Gates of Microsoft; he asked me if my guide dog was a bomb sniffing dog.
Below are answers to some of the most common questions I get asked.
People with disabilities who use guide or service dogs can go everywhere.
A service animal is a dog that is individually trained to do work or perform tasks for a person with a disability.
Examples of Service Animal include those who guide people who are blind, alert those who are deaf, pull a wheelchair, alert an individual to a seizure attack, remind one with a mental illness to take his/her medication, and much more.
A service animal is not a pet.
Do not touch the animal or give him/her treats without the permission of the owner.
Service animals are not required to be certified. If the person tells you it is a service animal, treat it as such.
A person is not required to carry proof of disability or to say why he/she requires the use of a service animal.
A service animal must be on a leash if local ordinances require that. But a harness, special costume or muzzle are not required and are only present when needed for the animal to do its job.
If the animal is out of control or presents an active threat the handler may be required to remove it from the site.
A business is not required to walk or otherwise care for the animal.
If an individual asks that you hold a guide dog, and if it is appropriate to the situation, hold the leash not the harness.
Allergies and fear of dogs are not valid reasons for denying access or refusing service to people using service animals.
An Emotional Support Animal is not a Service Animal.
A Service Animal cannot tell when a traffic signal changes color.
A Service Animal does not always know where it is. It is up to the handler to know where he/she is at all times.
According to the Americans with Disabilities Act, (ADA), a service animal can only be a dog.
A business or service cannot charge a customer extra for having a service animal.
My service animal is still smart even if he doesn’t know how to give “paw”.
Yes, my dog likes to play fetch.
The next time you see a service animal, remember these answers and tips. Also, remember to ask the handler what you can and should do, and ask yourself how you would like to be treated if you had a service animal.
Caricature of Lady Gaga in Wheelchair by Lauren Lange
The cultural appropriation of disability is a major obstacle in the struggle to achieve a just society in which individuals with disabilities are treated with dignity and receive access to supports and services to live richer, self-determined lives.
This article addresses two forms of cultural appropriation. The first form is the use of images of individuals with disabilities by able-bodied persons to promote a charity campaign/advocacy issue or to describe a current event. The second form of cultural appropriation relates to the use of images or objects associated with disability for performance art that is unrelated to disability advocacy.
When non-profit organizations or news corporations use images of individuals with disabilities that are meant to be inspirational or cause an emotional reaction, the population of individuals with disabilities as a whole are held back. This is because the images contribute to the reputation that individuals with disabilities are helpless, pitiable, and/or inspiring. The problem with being seen as inspiring is that often it stands in the way being seen as an equal. A recent example is a news story about two North Carolina State students on the football team who sat next to a student with a disability at lunch (news story). This story was widely circulated and was even posted by AUCD on Facebook. The troubling implications of this story were passionately described by Karin Hitselberger in her blog post, “Being My Friend Does Not Make You a Hero.” Hitselberger calls for change by writing: “It’s time for us to stop being inspired and surprised when we see disabled and nondisabled people engage in everyday interactions with one another. It’s time for us to stop praising able-bodied people for associating with or being friends with disabled people” (claiming crip blog). It was later revealed that the students eating lunch together were already friends and had no idea their photo was taken (real story of photo).
Those who are in a position to use these images should ensure accuracy and carefully consider the unintentional messages this content could be sending. Seeking advice from individuals with disabilities is recommended.
It is equally troubling when images or objects associated with disability are used to captivate or shock audiences in performances that are unrelated to disability advocacy. Musicians Lady Gaga and Rick Ross have used this form of cultural appropriation in live performances and music videos. Of the several live and on-screen performances in which Lady Gaga used a wheelchair, her performance as a wheelchair bound mermaid has received the most attention. Following the performance, Gaga was attacked by a group of people who threw eggs at the young starlet. It remains unclear if the attackers’ outrage was related to her inappropriate wheelchair use. Later, when Gaga and musician Bette Midler engaged in an argument about whether or not Gaga stole Midler’s act, neither of them seemed to be aware of the fact that the act was offensive.
In the case of Rick Ross, the rapper performed in Lil Wayne’s music video, “John,” while seated in a wheelchair with adornments to simulate movement called spinners. The only purpose of the wheelchair was shock value.
It was disturbing to see these musicians make light of the vital use of wheelchairs by using them for decoration. Kristin Guin, founder of Queerability, agrees. Guin, who identifies as autistic and bisexual, recommends bringing the inappropriate wheelchair use to the attention of the performers. “We would hope that the celebrity apologizes and agrees to remove the content,” states Guin.
We in the community of disability activists should not be paralyzed by anger over these instances of cultural appropriation. Instead, we should create opportunities to educate those who have yet to understand how to perceive and treat individuals with disabilities as equals. I call on anyone who encounters this type of behavior to make their opinions known.
This week we are pleased to introduce Joanne Coggins, a stroke survivor whose personal story inspires us all. This is the third blog in our series from the Brain Injury Association of Massachusetts (BIA-MA) and was written by Lauren Byrnes, Marketing and Communications Associate.
Photo courtesy of biama.org
It was Oct. 13, 2008 when Karen Kelly received a call that would change her and her family’s lives forever. She was told that her mother, Joanne Coggins, who was visiting a friend in North Carolina, had a staph infection from dental work she had weeks earlier and was going to need surgery for acute bacterial endocarditis. Doctors needed to remove a growth on her heart which was caused by the acute bacterial endocarditis. During surgery, a piece of the growth detached and traveled to her brain, causing her to have a stroke.
Karen and her sisters rushed to North Carolina to be by their mother’s side. Because of the stroke, Joanne lost her abilities to speak (termed aphasia) and eat and had no strength to be able to walk. The right side of her body was also affected.
Because Joanne was being treated in a North Carolina hospital, staff expected her to receive care at a nursing home or acute rehabilitation center in the state, despite Karen’s wishes to take her home to Massachusetts. The judge granted Karen temporary guardianship of her mother, who was unable to communicate on her own behalf, so that she could be transported to Massachusetts for care.
Joanne received occupational, physical and speech therapy. She learned to swallow and eat again—both enormous accomplishments—and was able to regain enough strength to walk. Joanne now lives at home with a 24-hour caretaker. However, her aphasia continues to be a challenge.
“Everything she can do we’re so grateful for,” explains Karen. “Over time she has learned to compensate [speech] communication skills by learning different ways to communicate.”
Regardless, Joanne’s aphasia is a constant struggle. Joanne is aware of what is happening around her and knows what she wants to communicate, but is unable to find the words, which can be incredibly frustrating for her. “It really upsets her,” Karen says.
Despite the challenges she faces, Joanne remains determined to regain the skills she lost. She now receives speech therapy through a unique program with graduate students and is learning to form sentences—something she was unable to do for the first three-and-a-half years after her stroke. “She’s been able to communicate so much more,” Karen explains. “Her expressive language is so much better.”
Karen works with her mother on other skills, such as cooking, writing checks and verbal exercises even while they’re in the car driving to appointments. Joanne remains determined not to let her stroke get in the way of her goals. She’s even learned to kayak and ride a bike, so she can ride with her granddaughter to the park.
Joanne’s granddaughter, who is learning to read and write, inspires her because they can both learn together. “It motivated my mom to have someone to go through it with,” says Karen.
Although the family has a long journey ahead of them, Karen says they are hopeful. They want to see Joanne drive again, speak more fluently, be able to read out loud to her grandchildren and write on her own without having to copy the words.
“We don’t concentrate on the things she can’t do,” Karen says. “The more she learns the more independent she becomes.”
Although Karen says she knows they can’t change their circumstances, they want to change people’s lack of knowledge about brain injury. “I want people to know how important it is to know about brain injury,” Karen says. “One out of six people each year are affected by brain injury and if it’s not you, it’ll probably be someone you know.”
The Brain Injury Association of Massachusettsprovides support services to brain injury survivors and their families, offers programs to prevent brain injuries, educates the public on the risks and impact of brain injury, and advocates for legislation and improved community services.
Years ago, I had the privilege of meeting Alex Brejcha while we worked together to find an accessible home for he and his wife, Tatiana. Alex was prepared to purchase a home and we had funding for modifications, yet the challenges in finding a home that could be modified for accessibility were overwhelming to say the least.
Yet Alex never gave up. In the process, his persistence, positive outlook and sheer determination were a lesson for us all.
This week I am pleased to introduce Alex as our guest blogger to share his personal thoughts about living with M.S.
Diagnosis and Early Symptoms
M.S. is a neurological disorder impacting the ability of nerves to transmit signals from brain to body. The biggest problem is that there are a variety of different ways that this impacts people.
In my case, the initial diagnosis was made in 1980 when tingling in the hands and coordination impairments immediately had a major impact on my life. I was an art student at Temple University in Philadelphia with a gallery interested in my work, but I did not have enough pieces yet for a show.
A combination of symptoms complicated things. I had visual problems which fortunately cleared up, but increasing coordination problems ended my art career hopes, and walking problems diagnosed in 1980 progressed to paraplegia between 1980 and 1985.
The good and bad of research
In retrospect I realize that part of this was my own fault, because another aspect of M.S. is that Affect has a very real Effect. In other words: attitude is a bitch, if you forgive the language.
To clarify: I was very fortunate to work graveyard shift at a major teaching hospital in Philadelphia for 27 years. We had an excellent medical library, and the first thing I did upon my diagnosis was go to the library to research what M.S. was.
This was a big mistake! What I failed to realize was that medical journals concentrate on the worst aspects of a disorder. As I was reading, I made the mistake of believing that what “might” happen “would” happen — and my body happily went along with it!
This is a crucial aspect of Multiple Sclerosis which people need to understand if they are diagnosed. This is a condition with a variety of forms ranging from mild to more progressive types such as I have.
Life is what you make it
It is critical to work closely with a neurologist specializing in this condition in order to take advantage of improving treatment paradigms that are being developed. Just because you are diagnosed with this disorder, it does not mean an end to your life.
As I wrote, I worked for 23 years in a wheelchair and drove independently — first in cars with hand controls, and later in a variety of converted vans. One advantage of the diagnosis was that I had a handicapped parking spot right outside the entry to the hospital and I didn’t have to pay for parking in the hospital garage.
To borrow a cliché: life is what you make it!
I never would have had the relationships I have been lucky to have (including a wonderful five year marriage to a woman I still live with), if I had not been diagnosed with M.S. The truth is, before M.S. I was a terminally, overly shy nerd, afraid to approach a woman.
But when everyone is staring at you anyway: what the hell?
This month I am pleased to introduce Patrick Gleason, Shriver Center Staff Writer, as our guest blogger. Patrick will be introducing us to the topic of Emergency Preparedness for people with disabilities.
Nobody’s ever asked me to be a victim before.
That sentence resonates in my head as I pull my wheelchair up next to a backboard. I am participating in a mock decontamination drill at a local hospital. These drills are yearly requirements, but I will be the first individual with an actual disability to participate for this hospital (instead of someone pretending to have a disability.)
As I am gently transferred from the chair to the backboard and sent down something like a conveyer belt with two individuals dressed like Star Wars storm troopers on either side, I can’t help but think, What have I gotten myself into?
Understanding the need for being prepared
That experience marked my first true understanding of emergency preparedness and response (EP/R) for individuals with disabilities. Prior to that, my only real exposure to emergencies involved downed trees or the occasional power outage.
Since then however, over the past few years I have been forced to come up with my own solutions during several emergencies.
• Using the light from a cell phone keypad to shut off my house alarm during a storm; the power was out, my parents were gone , and I couldn’t find a flashlight.
• Borrowing a security guard’s cellphone to locate my mother; we were separated at the mall during an unexpected fire drill.
Many challenges faced
My examples are obviously small-scale. However, people with disabilities often experience devastating impacts during emergencies and disasters, including separation from critical adaptive equipment and assistive technology, service animals, support from family, friends and caregivers, and critical services. The American emergency response system traditionally has not taken into account the needs of people with disabilities, as they are not often part of the emergency planning process.
We at the Shriver Center are working to change that.
Self Advocates take role in training
Nate Trull, a longtime self-advocate who also serves as a consultant to the Shriver Center, is also well-versed and committed to educating individuals with disabilities on EP/R. Beginning with his experiences at the rank of Life Scout, his interest blossomed to include serving as chairman of his own advocacy group Powerhouse, and offering free, ongoing, EP/R training and tips to advocacy and provider agencies throughout Massachusetts. He was also invited to attend a 2011 EP/R conference sponsored by the U.S. Department of Homeland Security.
“I love focusing on EP/R work for people with disabilities because I help them take charge of their own lives and help themselves,” Trull says with a trademark smile. “There is nothing I would rather do.”
September is Emergency Preparedness month; we hope these blogs will help you think about your personal emergency preparedness from a variety of perspectives!
I again found myself sitting opposite Dr. Maria Broderick in her offices in West Concord. The tone and texture of the space was soothing. The light from the sun was again beautifully illuminating the room. Today I wanted to know why.
Why have a practice that was focused on children and adults with disabilities? That seems so specific to me. I figured there might be an interesting reason why Dr. Broderick, has dedicated her life to this meaningful work. So, I asked her to share her story. It began with her childhood, before she was a doctor and simply known as Maria.
Personal story offers insight
When Maria was six years old she had appendicitis and spent time in the hospital. While in the hospital, she developed pneumonia and spent a longer than usual time there. Thinking this was a horrible experience, I asked Maria if she remembered being alone all that time she was in the hospital. Did she remember being lonely?
I was quite surprised when she told me she did not remember being alone or lonely. She remembered being one of many children in one large room. Not only were there some really sick children in the room, there were also children to play with once Maria felt well enough to play.
Listening makes a difference
There was one child that has never left Maria’s mind. He was an older child, maybe 13 years old. He had some sort of disability that required the use of a wheelchair. Maria remembered lying in bed in the evening when everyone else in the room was asleep and listening to this 13 year old young man talk to one nurse.
“He would ask her what kind of life could he could possibly have when he grew up. I do not remember what the nurse said, but I remember watching her listen to him. She really listened. How she spoke to him…her tone and manner…it really helped him. Even at six years old, I knew that was what I wanted to do for everyone.”
Six year old Maria dreamed a dream where all children were listened to in such a way that, regardless of their condition or station in life, they would find a way to their best selves. And now, Dr. Broderick does just that through her work in integrative health care, helping families with members on the autism spectrum.
