Disability Awareness

With having a disability, there are many challenges and misconceptions that I’ve come across. Some of the most common are health, accessibility, discrimination, and language usage. Thus, according to the Right of Persons with a Disability act in 2016: “A “person with disability" means a person with long term physical, mental, intellectual or sensory impairments which, in interaction with barriers, hinders his full and effective participation in society equally with others.”

A great number of disabilities are preventable, however there are a lack of affordable access to proper healthcare, aids and appliances. In my situation, I am very susceptible to health issues. Having a high spinal cord injury and being on a ventilator is one of many reasons why I may get sick or have infections more easily. When those with disabilities get sick, there are only so many options when it comes to accessible and affordable healthcare.

Although efforts have been given to ensure accessibility in most buildings, there are still multiple places that are not accessible. This includes transportation, access to services, restaurants, housing etc. The ADA (Americans with Disabilities Act), require all restaurants to be accessible along with Dr. offices, bars, eateries, theaters, hotels, shops, stores, shopping malls, private schools, museums and service establishments. Some people may not even be aware of the difficulties a person with a disability might face from participating in everyday life and common daily activities of getting into or to an area that is not accessible.

Not only do people with disabilities face discrimination in school there are certain public “ideas” about what someone with a disability looks and acts like. There are a limited number of education places that are available and inclusive. Along with this includes trained teachers and educational materials. I know I faced this firsthand when I was going to school and out in the public. It’s difficult to be out in a world that isn’t always accepting of those with disabilities.

Many people commonly use dated wording when speaking about people with disabilities. Mostly because they may have grown up with different terms. Over time, the terminology has changed, and some words can often be offensive. Disrespectful language can make people feel excluded and can be a barrier for participation. It’s important that people are aware of the meaning behind the words they use when referring to, talking to or working with the Disability Community. 

Use the term “disability,” and take the following terms out of your vocabulary when talking about or talking to people with disabilities. Don't use the terms “handicapped,” “differently-abled,” “cripple,” “crippled,” “victim,” “retarded,” “stricken,” “poor,” “unfortunate,” or “special needs.”. It is okay to use phrases or words such as “people with disabilities”, “disabled,” or “disability,”. When in doubt, call a person with a disability by his/her name.

In my own experience, I have been told by others that I’m an inspirational person and have a vast amount of courage to go through what I did after my accident. Just because someone has a disability, it doesn’t mean he/she is courageous, inspirational, brave, superhuman, or special. It is not unusual for someone with a disability to have skills, talents, and abilities. People with disabilities are the same as everyone else. To me, I’m just trying to get by as best I can and live my life as normally as possible.

I believe people with disabilities need to be more integrated into society by overcoming stigma. Thus, why I like to talk to others and share what I have experienced in my life. This is part of the reason why I blog, do public speaking, and show others my abilities despite my disability. Also, I think the scale of disability needs to be better understood by improving the measurement of disability, including all rights.

At some point in our lives, disability will impact all of us. Later in life you may gain a disability, know someone with a disability, or have a family member or child that you care for. Disability is a part of our everyday experiences. Everyone has a part to play in order to ensure that every single person, no matter what the ability, can achieve a type of society that is 100% involved.

Jenni

“The difference between the right word and the almost-right word is the difference between lightning and a lightning-bug”.

-Mark Twain

Life As a Quad V: Questions Answered

This blog post contains my personal answers to five of the most deep, thoughtful and intimate questions regarding being a quadriplegic. If you have any questions or comments, please feel free to leave one in the comment section below. I always look forward to what feedback people have or what questions they may want answered.

1. What life events shaped into who you are today? 

There are many things throughout my lifetime so far that have formed who I am now, along with my opinions and ideas. The first major one is my parents’ divorce when I was nine years old and in third grade. I believe it forced me to grow up faster and rely on myself more. Also, I feel like it caused me to be more independent life. The second, and biggest, was when my accident happened at the age of 16. It changed my thinking, allowing me to live life differently. It’s also challenged my thoughts along with patience towards others’.

2. What advice has stuck with you over time?

The biggest advice I’ve gotten and has stuck with me to this day is never take life for granted, you never know what’s going to happen. Accept without verification what you have and appreciate the things around you. In my situation I don’t have a lot of independence and require the use of others for just about everything. In the past, I never realized that anything could happen at any time; to hold on to the special moments and people that come about.

3. What is the day of a quadriplegic like?

I’ve often been asked what a typical day is for being a quad. While every quad is different, I can confidently generalize that with being paralyzed and fully reliant on others, one spends a minimal of several hours a day dealing with spinal cord injury care. Although I can only attest of my own experience, I can say for myself over the past 18 ½ years that I’ve had to modify the prospects about how much I can get achieved in a single day.

Life as a quad is different than someone who is able bodied. When I’m not dealing with any sort of medical issue like urinary tract infection or respiratory infection, I still have to focus on other daily tasks and how I’m going to get everything done in one day. Then there are those days where I have too much time and can’t seem to fill it up with things to do fast enough. Also, since I’m not working at this point in life, I can easily get bored without enough things to do. On every given day there so many things we need to look out for-it’s incredible.

4. What is the toughest part about being a quad?

The toughest part as mentioned before, is lack of independence. Having someone around constantly, helping me with my every need is a difficult task to handle. I believe it’s complicated for others to imagine an injury that is more emotionally and physically devastating and draining than being a quad. Those who are quadriplegics, face difficult obstacles in all aspects of their life. This includes a lack of privacy within their personal, family and professional lives.

5. What are the top things you’ve learned over the past years?

Despite losing function and breathing from the neck down, I have learned that it is possible to recover after a spinal cord injury. This includes both mentally and physically, although it takes a lot of mental power, determination and will to do. It also depends on the severity of the injury, along with how aggressively recovery is pursued. I believe having a positive outlook on life and staying motivated along with hopeful is key. 

Life as a quad can always vary depending on spinal cord injury challenges. I like to think of myself as a positive, compassionate and understanding person. I have many people to thank for my success of where I am at today, including friends, family and caregivers. Despite surviving as many years as I have with a SCI and continuing to thrive, I have many more accomplishments I’d like to get done. I know that one can only do so much in a lifetime, but I remain hopeful that my footprint will leave a mark in the sand.

Jenni

What Happens In An Emergency?

Every person with a disability has different needs in an emergency or matter of fact situation. It’s crucial that each person take stock of their own needs and required supports. This includes being able to assess the situation and how they can meet those needs depending on what the situation is. As far as me having a spinal cord injury, there are certain things that I need that may be different from others.

It’s very difficult on everyone when one or more of my caregivers can’t work. Especially when there is nobody to replace them. It is usually up to my family to help me, do my cares, and make sure nothing goes wrong. Since I require 24/7 nursing, especially if something went wrong with my ventilator or tubing, it’s very important that someone is always within earshot. This is one of the positives to having a nurse with me all the time. Although I don’t always want someone with me everywhere I go, I need every hour I can get with them.

What do I do if something comes disconnected on my vent or tubing? If something comes disconnected, the first thing that happens is my vent will alarm. That notifies the persons taking care of me that something has come disconnected but doesn’t tell you where it is. Then if they can’t find the area within a couple of seconds, they grab the Ambu bag and start bagging me. It’s difficult to bag me and find where my tubes came apart at the same time, so if someone is around to help it’s the best scenario. Although, if not my nurse has to do both at the same time.

Every place I go, my nurse comes as well. If I’m just going outside for a roll, they load my wheelchair with my portable suction machine, oxygen, and a backpack that has supplies in case of an emergency including an Ambu bag. If I’m going to an appointment, I still bring the suction and oxygen, although instead of the backpack, I bring a rolling suitcase. In the suitcase is everything that’s in the backpack along with other supplies, because I take it when I’m going to be farther away from my house and for a longer period of time.

Along with emergency and extra supplies, my nurses pack their charting sheets along with a travel chart. In it is an up-to-date list of all my prescription medicines. Included is their generic names and the dosage amounts. Also, there is a list of my allergies. I also bring my medical alert card with information about my medical needs, along with my insurance and medical assistance card. It’s important for me to bring along a list of all my doctors and emergency contacts as well, just in case.

Jenni

Fifth Year Raising Monarch Butterflies

This year, I found one Monarch butterfly on a milkweed plant across the street from me. Milkweed is their dependent food source and where they lay their eggs. It’s also a weed that grows wild all over the place. Although I eventually want to plant some, I don’t have any in my yard, but my neighbor has a few stocks, and my friend has a bunch in her yard.

After I found one, I texted my friend and asked if she could bring by some milkweed for the caterpillar. She hadn’t looked on hers yet this year, and when she did, she found 8 more! She brought them all over along with more food for them. So, in the beginning that was a total of nine. One was small, and it died within a week of having it. The rest spun into a chrysalis all within a few days of having them.

So far, I’ve released six. I gave one to one of my nurses, and the last one is drying its wings and I will release it later on. I know when to let it go when it begins moving around in the container and starts flapping its wings back-and-forth.. It takes about two weeks for them to undergo a radical reorganization of its tissues before it breaks free. Once they do, it takes about 2-4 hours for its wings to dry, and then I can release them. I was able to see all of them go from caterpillars and then come out into beautiful butterflies!

Since I had so many, my niece, Avery, got a chance to help release a couple of them. Like me, she likes butterflies as well. When she is a little older, I’ll probably give her a caterpillar or two to take care of and watch the whole transformation. Also, it is easy to tell if they are male or female if you can get a glimpse of the right area. The males have two black dots on the top of the bottom two wings. The females don't have any dots on their wings. So far I've released three males and three females.

Avery is so photogenic! Both of these butterflies are male.

Male butterfly on my arm.

Female butterfly

Jenni