Blog
HYDROCEPHALUS AWARENESS MONTH by Emily Ball
September is Hydrocephalus Awareness Month. Hydrocephalus is a neurological condition caused by an abnormal buildup of cerebrospinal fluid within the ventricles or brain cavities. It’s controlled by a device called a shunt that regulates the flow of the fluid. Hydrocephalus can be present at birth or acquired afterward. Both children and adults can have this condition. There are communities online where people with the condition and their families can connect and which can help families and individuals. Head injuries, intraventricular hemorrhage aka strokes, or brain tumors are some causes of the condition. Some symptoms of untreated hydrocephalus in children are headaches, blurred vision, and balance issues, as well as cognitive issues.
My connection with this condition is that I had a stroke at birth and a brain bleed that led to multiple disabilities, including hydrocephalus. As a small, premature infant, I had multiple surgeries until the neurosurgeons could finally get the shunt to work.
Another issue is problems with short-term memory which I struggle with. My family tells me when I woke up from my first (that I remember) shunt surgery at age 5 I said, “I feel better now!” “Can I go home?” My parents laughed and said no, I had to hang out with the nurses for the night. Everything was fine until the summer of 2006 at age 14. My family and I were on vacation, and I didn’t feel right. Fast forward to the drive home, I became violently ill, and my mom did the one thing she and I dreaded: called my neurosurgeon. I had to have surgery that night. A few weeks later, that first shunt failed so I had to have surgery again. My nurses on the pediatric unit were awesome, very friendly, and reassuring. I’m still bummed I missed a concert but I’m making up for it now! This was right before high school started, so it made my freshman year difficult. In hindsight, having my head shaved was actually “in” in 2006 and my hair grew fast.
Hydrocephalus affects people in many ways but that doesn’t stop us from living full lives. We graduate high school, go to college, have careers, and do everything someone living without the condition can do. I hope you’ve enjoyed my informational story about hydrocephalus. Here is a link to the Hydrocephalus Association website with more information about the condition. https://www.hydroassoc.org/
INCLUSION? WHY IS THAT IMPORTANT? by Phillip Shenkman
Inclusion? When you hear this word, what does this make you think? For me, I think that everyone, regardless of disability being included in activities in schools. But currently, I do not feel like this is being accomplished in today's day and age. This is because non-disabled individuals, schools, and workplaces do not truly integrate individuals with disabilities into the activities and courses that non-disabled individuals have access to in High School. Yes, we do have unified activities but I truly do not believe that this is enough. I believe that individuals that have disabilities are not given the opportunity that they deserve to shine. A lot of times, severely disabled individuals are told they can only participate in Unified activities, even if some of these individuals can handle the normal activities that non-disabled students can participate in. With the right help and support, anyone regardless of their disability should and can participate in activities that neurotypical peers typically participate in.. The more people that are included the more people will feel that they belong, which makes the activity more engaging and fun for everyone. Another major reason why I think those with disabilities are excluded from certain activities is that individuals often decide to look at the “dis” portion of the word instead of looking at the “ability” in the word disability. I am not saying that this happens in every single scenario, but this has happened and can happen again. Individuals that are non-disabled often look to see where and what the individuals that have a disability need assistance on, not where they can include them in normal activities. So, inclusion is not just including these individuals with disabilities in normal activities that non-disabled students get to participate in. It is honestly also truly about how they are treated. Now, there are two ways that you can treat an individual with a disability. I can refer to them as roads. You can take the high road the more responsible and mature road or the low road treating these individuals the wrong way. So the way one is treating these people like their normal is not reminding them that they have a disability. Making them feel that they are wanted and cared for by friends is crucial for those with disabilities. On the other hand, the other road is completely treating these people like they're different like they're not equal as you are. If you treat individuals with disabilities as non-equals then you are feeding into the oppression that has happened throughout time to numerous different groups. So I urge you to be on the right side of history when it comes to the inclusion of individuals with disabilities.
MY JOURNEY FROM I THINK I CAN TO I KNOW I CAN
My disability began when I was 15 months old. I had my first seizure and trip to the hospital then; I was diagnosed with Tuberous Sclerosis: TSC Alliance. I spent my educational years in special education and was supported by A LOT of people. I am happy to say I am seizure-free, though still have an Intellectual Disability.
My first memory of work was in high school when I was getting yelled at by my training coach at a little restaurant in New London called “Candy’s Cozy Kitchen”. I was trying to plie’ (fancy ballet move) while mixing cake batter.
Hey, I was 17 I don’t even remember what my brain was thinking back then. That was my first lesson in how to behave at work. I think I gave her a chuckle and a story to tell.
Since then, I have had 6 jobs. All of them had a paid job coach and transportation to and from work. I have worked in food service and manufacturing. All my employment coaches gave me good advice and some employment tools. My favorite advice was from Addison who said, “You can achieve anything you put your mind to”. He knew I loved my job and was doing good. He may have known my company was moving to TN and I would soon be out of work.
Today, I’m 38 years old, and I am working independently without a coach at a large retirement community. I still use the tools that help me, like checklists, notifications on my phone, and a work watch that shows me how I’m doing on time. In the beginning, I could have used GPS! I kept getting lost in the building; it really felt like Narnia to me.
As independent as I feel at work and all the things I learned, arranging transportation to and from work has been the biggest challenge. I have Uber, Lyft, and the bus route on my phone. I qualify for ADA transit (dial a Ride) https://www.transit.dot.gov/regulations-and-guidance/civil-rights-ada/ada-regulations which works great when they are running on the days I work. But they have a BIG window that I can be picked up in. For example, I start waiting at 6:30 am to be at work at 8:00 am. I still need to deal with waiting when UBER or Lyft doesn’t have a driver. So… I wait.
I am getting good at waiting. It is the price for my independence. I am proud to pay that price.
So, I ask you, what are you willing to do to be independent?
DISABILITY PRIDE
In my opinion, disability pride means being unapologetically accepting of your differences. For example, I have worn leg orthotics and other forms of braces since I was a young child. I have used a wheelchair since kindergarten. While I hated going to my doctors’ appointments to get my AFOs made, the process of doing so was fun. My wheelchair was and always will be my largest difference. It may just be a way to get around to others but to me, it is a door to my independence. Before having a power chair, I was reliant on others to get from place to place.
Life can be difficult for me, but I have done fun things like adaptive sports, and gone on a trip to Disney World through a wish granting foundation for disabled kids. Recently I did a segment for a project that CT Public Radio partnered with the CT Council on Developmental Disabilities named Able Lives. Through my interview, I was glad I could reach a wider audience and show that disabilities, just like one’s LGBTQIA+ identity is something to be seen and heard.
The negative, the positive, the neutral, it all meshes together to make up my life as a disabled person and this Disability Pride Month I am proud to embrace that.
WHAT DO YOU SEE YOURSELF DOING IN 20 YEARS?
We all have dreams that we have set and made for ourselves. Whether they are outlandish or very realistic, we owe it to ourselves to reach them. When thinking about what you may want to do in your future, be as outlandish as possible because no dream is too large. You can have found inspiration in the most practical way, or you can just go for a very exaggerated dream and then be very happy for how far you’ve come in the end. Either way you choose, you are going to have to 100% believe in what you are choosing to do.
After you have chosen what you want to do in 20 years, you have got to ensure that you will not accept anything less. For, myself I have found inspiration in the music that I listen to. Letting myself connect to the music to strengthen my confidence and improve my motivation. Using this method I hold myself to a higher level of achievement, using this to advance everything that I am putting my efforts into.
PART 3: DIFFERENT WAYS TO COMPLETE YOUR BALLOT AND VOTE
In the state of Connecticut, there are different ways to complete your ballot and vote. The article below describes these different methods:
Manual Ballot
In Connecticut, the most common way to vote in an election is by paper ballot also known as a manual ballot. On this ballot are the names of the candidates who are running for election and, occasionally, referendum questions. To complete the manual ballot, voters fill in small ovals by the names of the candidates they choose and their response to any referendum questions. The voter darkens the circle or oval next to the candidate’s name using a black or blue marker. They also mark their responses to the referendum questions. Once the voter completes all their choices, they place the ballot in the optical scan tabulator where it is counted and securely stored.
Advocacy Tip: If the voter makes a mistake, they can request a new ballot as many times as necessary.
Ballot Marking Device
The Ballot Marking Device is designed as a way for voters to mark a ballot when they cannot access the ballot due to disability or the inability to read the ballot choices. Anyone, however, can use the ballot marking system! The ballot marking device includes a tablet, a keypad, and headphones. A voter can either complete a ballot by using the touchscreen on the tablet or by using the audio system which requires the voter to listen to the ballot through headphones and make choices on a keypad.
If the voter chooses to use the tablet, the names of the candidates appear on the touchscreen and the voter touches the name of the candidate they want to choose. A check mark will appear in the box in front of the name of the candidate indicating the voter’s choice. If a voter makes a mistake, they can touch the box again to remove the check mark. To vote for a write-in candidate, the voter touches the box to the right of the words, WRITE-IN. A keyboard pops up, and the voter types in the candidate's name. The voter can review the ballot and make changes. When they are satisfied with their choices, they will be prompted to complete the ballot. The ballot marking device will then print the voter selections on a manual ballot. The ballot is then put through the tabulator to be counted and stored.
The audio system provides verbal cues to guide the user through the voting process. These cues will require voters to push different buttons on the keypad to make their choices. When the voter has finished the ballot, there is an opportunity to review their selections. Like the tablet feature, the voter will be asked to complete the ballot, the ballot is printed and goes through the tabulator to be counted and stored.
The ballot marking device has no memory. Once a ballot is printed, it is automatically erased from the system. Therefore, if the voter reviews the ballot and is not happy with the selections, they can request a new ballot but will have to start all over again.
Advocacy Tip: If you want to use the ballot marking system, let them know when you check in. A poll worker will activate the device for you and ensure that you have the proper ballot.
Absentee Ballot
An absentee ballot is a manual ballot that is completed by the voter who is unable to be present at the polls on Election Day. To be eligible for an absentee ballot, a voter must meet one of the following criteria:
● Will be absent from town during all hours on voting day;
● Have an illness which prevents them from voting at the polling place;
● Have a permanent physical disability which prevents them from going to the polls;
● Active duty in the US Military and away from home;
● Have a religious tenet that forbids activities on Election Day.
A voter who needs to vote by absentee ballot must first complete and submit an absentee ballot application. The applications are available through the local Town Clerk. After the absentee ballot application is received, the voter is given or mailed the actual absentee ballot. That ballot is completed by the voter and may be mailed, placed in a ballot box at the voter’s town/city hall or given to the Town Clerk. REMEMBER: Absentee Ballots must be received before 8 PM on Election Day.
Advocacy Tip. Be very mindful of the date of the election.
Emergency Ballot – This is an absentee ballot that may be requested by a voter who experiences a health crisis within 6 days of Election Day and the crisis prevents the voter from going to the polls. A voter can obtain an emergency ballot application by contacting their local Town Clerk’s office. The completed form must be returned to the Town Clerk's office.
Curbside Voting - If a voter has a disability or illness that prevents them accessing the polling place on Election Day, may arrange for curbside voting at the polling place. The ballot is brought outside to the voter by two designated polling officials. The voter completes the ballot and the officials bring the ballot into the polling place and deposit it into the tabulator. Curbside voting is only to be used on rare occasions when a voter can’t access the polls due to illness or injury that occurred close to the time of the Elections.
Advocacy Tip: If the voter needs to used curbside voting, they should contact the Registrar of Voters and arrange for assistance.
If you have questions about any of the ballots or would like to see samples, contact your local Registrars of Voters.
PART 2: VOTERS WITH DISABILITIES - WHAT ARE YOUR RIGHTS?
All polling places must be physically accessible to persons with disabilities. The route from the accessible parking to and through the polling place must be able to navigated by individuals using mobility devices such as wheelchairs, canes, and crutches. The process or methods of voting must also be accessible to voters with disabilities. Some of the other rights of voters with disabilities include:
● Access to a sample ballot in large print.
● Any videos for use by voters must be closed captioned.
● Voting privately and independently – voting equipment for voters who cannot use a paper ballot to vote privately and independently.
● Moving to the front of the line if the disability prevents the voter from waiting.
● Unlimited time in the polling place to complete the ballot.
● Have someone assist you with marking your ballot – There are some exceptions to this rule.
● Vote using any method at the polling place. Currently, voters can manually complete a paper ballot or use the ballot marking device that must be available at all polling places and the Election Day Registration location.
● Bring a service animal into the polling place.
If you are a person who has a guardian or conservator of the person, you cannot be denied the right to vote unless a probate court has issued a specific order stating that your right to vote has been taken away.
Advocacy Tip: If your polling place is not accessible – on Election Day, contact the Elections Division of the Office of the Secretary of the State at (860)509-6100.
After Election Day, you can file a complaint with State Elections Enforcement Commission at:
State Elections Enforcement Commission
55 Farmington Ave
Hartford CT 06105
Phone Number: 860 256-2940
Website: https://portal.ct.gov/seec
PART 1: REGISTERING TO VOTE
Are you registered to vote? Are you eligible? To be eligible to vote in Connecticut, you must be a U.S. citizen and 18 years of age by the day of the election. You must also be a resident of a town in Connecticut. That’s it!
There are a lot of options for voter registration. One of the fastest and easiest ways to register is online through the Secretary of the State’s website: http://voterregistration.ct.gov/OLVR. You also have the option of registering at the Department of Motor Vehicles and many other organizations offer paper registration forms. Some of these locations include your local Town Clerk's and Registrars of Voters Offices, colleges and universities and public libraries as well as the Departments of Rehabilitation Services, Social Services, Developmental Services, and Public Health.
It is Election Day and you forgot to register to vote. It’s NOT too late! You can still register and vote on the same day! You don’t do this at your polling place. You register and vote at your Town’s Election Day Registration location or (EDR). The EDR location is open during the same hours as the polling place, 6:00 AM to 8:00 PM. Because you are registering to vote on the day of the Election, the ID requirements are more stringent. Some of the acceptable forms of ID include:
● Driver's License
● Birth Certificate
● Learner's Permit
● Utility Bill Within 30 Days of Election Day
● Paystub
● Paycheck
● Current Bank Statement
● Social Security Card
Advocacy Tip: If you are registering to vote on Election Day, check with your local Registrar of Voters about the location of the EDR and the requirements for IDs. Get there early – they can be very busy places on Election Day!
Inspiration Porn: The Objectification of Disabled People
Inspiration porn, a term describing the objectification of disabled people by people without disabilities, is an ablest concept. There are several different forms including videos, articles, and memes. It is used to motivate non-disabled while completely stripping the subject of their personhood. Oftentimes, it is acute child shown walking without their mobility devices. “If they can do it so, can you!” Other examples include portraying disabled people doing normal things like going go to prom or playing sports. The phrase “No disability in life except a bad attitude.” is especially harmful because it strips away all of the societal and structural barriers people with disabled people face. Sensationalizing an able-bodied person asking a disabled person to prom is harmful because oftentimes all the focus is placed on the able-bodied person and there is little mention of the disabled person.
Inspiration porn is detrimental to the disabled population because more often than not, people who share it are well-meaning individuals. Inspiration porn means putting unrealistic expectations on people with disabilities just to prove to non-disabled that their lives may be hard but “at least they are not disabled.” Inspiration porn is so normalized in society nowadays that people do not realize how hurtful it is to people with disabilities. Something as simple and benign as a stranger saying, “So nice to see you out and out about.” when someone in a wheelchair is going about their day is actually quite passive aggressive. It is as if to say people are lucky to be out in public.
Inspiration porn is not the “uplifting, “feel good” story or meme you may think it appears to be. I suggest the next time you see a similar story in the news to reflect and say, “Would this be in the news if the person wasn’t disabled?’ Disabled people are people like everyone else and not fictional characters, and deserve to be treated like anyone else.
What can you add to your PPT/IEP/504* meetings?
by Jake Shumbo, Youth Intern
My first PPT I was bored out of my skull. Over time, I have learned to enjoy them. I enjoy speaking about where I have been successful and where I want to venture next. I enjoy learning about new opportunities and the path to them.
When you are invited to your PPT meeting it may be intimidating at first. It was for me. You may hear your teachers tell you what you can’t do. They did it to me. A bunch of adults talking about you and not to you and reading from reports that are hard to understand. That happened to me too. Here’s what you need to do: prepare yourself. Expect the unexpected. Read the reports ahead of time (and ask for help in understanding). Prepare goals and objectives. Advocate for yourself. Practice leading your meeting.
When I go to my PPT I do the following things with my team:
1. Set realistic goals
2. Plan paths to those goals. Include a few options
3. Choose the right path for you
4. Put the plan in motion
5. Identify supports, accommodations, and modifications needed
Confidence and belief in yourself and your support team is essential to a successful meeting and year. I feel it is important to lead your PPT. Be the boss, it’s your life!
PPT's should not be intimidating. They should be productive and could even be fun. Take control of your life by taking control of your PPT.
Good luck :)
*PPT: Planning and Placement Team
IEP: Individualized Education Program
504:Section 504 Plan
Person First or Identity First: How to Address Your Child with a Disability
Person first language is the belief that emphasizes a person’s individuality and not their disability. It conveys respect that they are a person, and not just defined by their disability.
Identity First language is the belief that a person’s disabilities are a significant part of one’s identity. Some people may prefer this term because it emphasizes the effect their disability has on their life.
Person first and identity first are two different individual preferences. The key term in this sentence is preference. A parent may know their child like no one else, but that child knows what living with a disability is like firsthand. Depending on a child’s age, they may have their own preferences. For example, if they were born with a disability, they may see their disability as a part of themselves. Or they may be born with their disability but feel very disconnected to that side of their identity in which case they prefer person first language. Parents and caregivers should listen to their preferences and respect them.
Language regarding the disability community is a very personal choice. For nondisabled caregivers or parents, I suggest letting your child take the lead. Whichever identity the child chooses, better it be their decision, because it is their body and their choice
Self-Care during the times of COVID-19
To begin with self-care is the number one priority at any point in time, whether you are a front-line worker or an average-joe. In order to successfully promote yourself, job or an action that you’d like to inspire, you’ve got to have an open-mind and a driving force to accomplish what you set out too.
Self-care does not only include your health, happiness or even what you are doing to make yourself feel better in any given moment. It means still doing what makes you feel like you are accomplishing your goals that you are meant to be in that moment in your lifetime.
In conclusion, if you want to take care of others the first thing that you should do is ensure that you are at a 100% yourself. This will let you be able to support others as well as yourself in any situation that you may encounter.
Aha Moments!
Aha moments, those moments that give you a sudden glimpse of clarity and direction. We have all experienced aha moments.
In my life my aha moment occurred when I realized that I was not leading myself to the future that I desired. I was uninvolved and not interested or in tune with my future.
How could I ever expect to succeed if I could not be bothered?
How could I expect others to believe in me if I did not even believe in myself?
That was my aha moment.
I decided I needed to be involved, I needed to have a voice. Then opportunities found me. I had positive impacts on others and myself.
In all of these experiences you’ve got to discover something new about yourself.
How can you improve yourself, your environment, and your experiences with others?
How can you reach the future you that you want to be?
Think about how your positive attitude and actions can change not only your world but the world around you.
Maybe you can inspire someone else’s aha moment!