This blog post is different from what I normally post. This is just a free form write up on how having multiple disabilities affects my life.
Having a disability means fighting everyday to prove why you’re worthy of receiving services.
Having a disability means fighting insurance, social security, and medicaid to prove why you need services.
Having a disability means having to explain what it is, what it means to you, and how it affects your life.
Having a disability is answering the same questions over and over again.
Having a disability means I may get judged just for having autism.
Having a disability means I have to protect my health especially in the season of COVID-19.
Having a disability is deciding whether or not to disclose your disability to a friend or not.
Having a disability is deciding whether or not to disclose a disability on a job interview.
Having a disability is deciding when I need to mask my autism and when I don't.
Having a disability means when I mask my autism I pay for it later.
Having a disability means the employer can decide to pay me less or to not interview me at all based on my application.
Having a disability is worry about if I’ll secure housing when I’m older.
Having a disability is worrying about if I’ll be able to provide for myself when I’m older.
Having a disability means having an ABLE account.
Having a disability means signing over power of attorney at age 18.
Having a disability means my parents have to sit in on IEP meetings through kindergarten to twelfth grade.
Having a disability specifically autism is having scripted language so you don’t stumble on words when I speak.
Having a disability specifically autism means I prefer to have text communication over spoken communication.
Having a disability specifically autism means social communication is exhausting for me.
Having a disability specifically autism means having backup communication like text to speech in case of a meltdown or medical emergency where I’m unable to speak.
Having a disability means I’m unable to drive long distances.
Having a disability means time flies by or it goes super slow.
Having a disability means I be hyperfocused on a task for a long period of time.
This blog is also posted on Photography through Autism Blog.
1. Ask for or Request your Accommodations.
This may be the most important thing I talk about in this blog. In public schools, students receive accommodations through a 504 plan or an IEP. For parents whose students still have a 504 plan or an IEP, now is the time to review those plans before the school year begins. In higher learning, universities and community colleges have an ADA office where students set up a meeting and accommodations are given to students. This meeting should be set up a few weeks before the semester starts. Students with disabilities at my community college are responsible for filling out a form with the ADA office every semester to receive accommodations that are on file. At my community college, students are then responsible for giving professors the letter of accommodation on the first day of class. However, due to coronavirus my ADA office has been emailing letters to professors and copying students on the email.
2. Routine, Routine, Routine.
With all the changes due to coronavirus, it is important to have a routine. Some schools are teaching executively online while others are using a hybrid model where students are coming in only on certain days. It doesn't have to be a strict one or where every second of the day is scheduled. Important things to include in a routine: wake time and bedtime, mealtimes (breakfast, lunch, dinner, snacks), work and/or school, homework, hygiene (showering, brushing teeth, etc.), and chores. Not all of these elements need to be included as everyone's needs are different. If your into technology, putting events into a calendar on your phone is a good idea. There are hundreds of apps that have a calendar function in them as well as scheduling apps for people with disabilities. There is also an app called Tiimo specifically designed for people with disabilities to help with schedules. It can be used across multiple devices. More information can be found here: Tiimo website. Choiceworks is another great app used for scheduling for people with disabilities. Choiceworks allows you to create an unlimited amount of schedules. There is a waiting board for people with disabilities to practice waiting skills. It also includes feelings boards and feelings scales. The user is allow to choose an emotion they are feeling and two coping strategies are shown to pick from. More information can be found here: Choiceworks in the App Store.
3. Get Organized.
This will vary person to person depending on your needs. Some might need a planner or a checklist. Others might need color coded binders, notebooks, and folders. Some might need a tidy desk space. There are also many apps out there that can function as a planner or to help you plan out your assignments. An app I use to help plan out assignments is iStudiez Pro. iStudiez Pro allows you to create multiple types of schedules, input professor's contact information and office hours, keep track of assignments and tests, calendar integration with third party calendar events, export your schedule to share it with others, and to keep track of your grades and GPA. More information can be found here: iStudiez Pro in the App Store.
4. Get Connected.
In this time of coronavirus, it's very easy to get lonely. If you're in high school, look into your school clubs. If none interest you consider starting your own. If you are in higher learning, get connected with your school's student life office. They usually have a list of events scheduled throughout the semester. Student life offices are open to student ideas or starting a club of your own. If you are working, look into your local parks and rec. Many community support groups are now online, including Barrier-Free's monthly Zoom Social Clubs! These social clubs are free to attend and provide opportunities to meet people from all over the world who share some of the struggles you do. Facebook groups, Facebook events, non-profit organizations, and disability are great places to look for social events.
This is an all inclusive resource. It includes visuals, posters, lesson plans, videos, social stories/narratives, sequences, and communication boards with all things needed to know about coronavirus.
“Nothing about us, without us.”
"The 30 anniversary of the signing of the American with Disabilities Act was a few days ago, July 26th, 2020. The ADA was signed July 26, 1990. The ADA put simply is a federal law that prohibits discrimination based on disability. The ADA includes those with physical and mental disabilities. It requires reasonable accommodations be provided to those employees with disabilities as well as accessibility to public places. The ADA is often referred to as “ The Emancipation of the Disabled.”
Crip Camp is a documentary film about Camp Jened, a camp where non disabled and disabled people came together in a care free environment. The film shows the perspectives of people with lived disabled experiences. “Crip Camp” also shows disability history in the way our disability ancestors fought for disability rights like they did for civil rights. Many people with and without disabilities are unaware of disability history. People with disabilities are often discriminated against, unable to access public places, and isolated from others. This happened both in history and now.
"Ugly Laws" and State Institutions
Many cities passed "ugly laws" which made it illegal for any person diseased, mutilated , or disfigured were not allowed to show themselves in the public view. Many people with disabilities were institutionalized because their family was embarrassed of them and/or couldn't take care of them. These institutions were state run, had large barbed wire fences, and were forgotten about in society.
Passage of the Civil Rights Act
The passage of the civil rights act laid the groundwork for disability rights legislation.
Center for Independence Living
The first Center for Independent Living is formed in Berkley, California in 1972. It is the first center to be recognized for independent living.
Passage of the Rehabilitation Act
In 1973, the Rehabilitation Act of 1973 was passed. The law states, “No otherwise qualified handicapped individual in the United States, shall solely by reason of his handicap, be subject to discrimination under any program or activity receiving federal financial assistance.” This law was intended to prohibit discrimination in federally funded programs and services.
Passage of Education for All Handicapped Act
In 1975, the passage of the Education for All Handicapped Act permitted disabled children to be integrated into the public school environment. This act was later renamed into Individuals with Disabilities Act or IDEA. In the same year, the supreme court ruled that people could not be held against their will, or placed in a psychiatric hospital institution, unless they are proven to be a threat to themselves or to others. In the court case named O’Connor v. Donaldson.
Section 504 Sit-ins
In 1977, protesters and disability activists in ten cities demonstrations and occupants of the federal department of Health Education and Welfare or HEW to force the Carter Administration to issue regulations to implement Section 504 of the Rehabilitation Act of 1973. The longest demonstration was held in San Francisco, California it lasted a month long. On April 28, 1977, HEW secretary Joseph Califano signed the regulation.
Passage of the Civil Rights of Institutionalized Persons Act
In 1980, congress passes the civil rights of Institutionalized Persons Act which allows the justice department to file suit if a person institutionalized rights were violated.
The Capitol Crawl or Crip Crawl was a protest of more than 1,000 disabled people who crawled up the Capitol steps. Jennifer Keelan, an eight year old with cerebral palsy said " I'll take all night if I have to." The Capital Crawl gained much attention and political pressure. This lead Congress passed the ADA within four months and George H.W. Bush signed the ADA into law July 26, 1990.
Why is it important to know disability history?
I think it's important to raise awareness around these events in history because not many people with or without disabilities have knowledge of what happened. Also, if we as people with disabilities don't understand our history we are bound to repeat it.
Now and Moving Forward
This blog is also posted on Photography through Autism Blog.
It might seem relatively easy to think about how to treat people with disabilities with respect. But sometimes, we do things that we don't necessarily realize aren't proper etiquette. So what is the proper etiquette when engaging with the disability community? Read on!
First of all...people with disabilities are just that: people. The Golden Rule of "Treat Others the way you'd like to be treated" applies everywhere. There's no *special* way to talk to them. Just talk to them. But, there are some small intricacies to be aware of.
Person-First Language: The person comes before the descriptor. Therefore, you wouldn't say "a disabled actor." We say "actors with disabilities." This type of language emphasizes the person first, not their disability. Disabilities can be seen as part of someone's identity, but it's not their entire identity. Sometimes, it's important to think about whether a disability really needs to be addressed at all.
A second reason why this is important is to avoid generalizations. One may not mean anything if they were to say something like "The disabled" or "The autistics," but that erases the identities of the people whom they are actually talking about. "People with Disabilities," and "People with Autism."
Wheelchair Bound vs. Person Who Uses a Wheelchair: People are not bound to their wheelchairs. They are not restricted to wheelchairs. Wheelchairs are often actually quite liberating to people with physical disabilities, because it provides them mobility.
Wheelchair Etiquette: A wheelchair serves as a person's legs. Unless you have explicit instruction from the user or their companion (if the user is nonverbal), you should not attempt touch or attempt to move the wheelchair. If you want to offer help, offer it only if you can see that the user is struggling to do something. But remember that touching other people's bodies unsolicited is always inappropriate, and since the wheelchair often serves as legs, it's inappropriate as well.
Conversations: You can have conversation with someone who uses a wheelchair the same way you do with anyone else; just look at them and talk. Try not to bend over or kneel down just to talk to them--this can be patronizing--and if you can, sit to be at eye level. But don't take any extra steps that you don't need to; it's just a regular conversation! And avoid asking about the wheelchair--unsolicited questions like "So how do you do xyz?" are inappropriate.
Companions or Counselors
Some people with disabilities are frequently accompanied by counselors or companions. If you have a question for the person with the disability, just ask them. I personally have worked with children with disabilities, who were perfectly capable of verbalization, and had other people ask me a question about the child. If the intended target of the question can't answer for themselves, their counselor will step in. But don't immediately assume that a person with a disability can't answer for themselves! Even if they are nonverbal, talk to them, because they will very likely pick up that you are treating them like children, by talking about them to someone else instead of right to them. Address everyone!
Some Final Quick Tips...
Don't ask someone what their disability is.
Don't stereotype disabilities! While some people with disabilities will have shared qualities or behaviors, don't assume everyone with that disability will,
Don't assume every person with a disability needs the same type of accommodation.
If you have questions, the CDC offers this table of the "do's" and "don'ts" of language used for and with people with disabilities.
We at Barrier-Free work tirelessly to ensure we have an open, accommodating space full of respect for others. It's important to educate others, and correct them when needed.
We can work together to make a friendly world!
Published by Laura Stall
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