Prepare for Emergency When Being Nonverbal

Prepare for Emergency When Being Nonverbal

I have talked about being nonverbal, but today I will talk about what you might do in an emergency if you are alone. During the warm months, I am usually out and about on my own. Going to church or going downtown Naperville on a beautiful sunny day is fun, although, the weather is not good for that this year. What do you do when you need help but you are by yourself? 

Cell Phone

This post is going to be focusing on people who are nonverbal but most of it will be good for any person with a disability. First thing is to have a cell phone on you. Put it somewhere a person can find it quickly. Today’s cell phones can allow you to identify people in your contacts to be emergency contacts. I just recently got a new phone and I have to do that. I know I am bad. 

Making Cards

The second suggestion is to make a few small cards on a key ring and put it somewhere in your wheelchair. On the cards, put your name, your address, your disability, and maybe emergency contacts as well. I also would explain how to communicate with you. For me, it is easier to ask me yes and no questions.

Another important thing to put on the cards is to unlock your power wheelchair so they could push you. Besides that, explain how to transfer you. You might have several scraps to undo before transferring you. If you can stand a little, put that on the cards. After you finish the cards, I would laminate the cards so they don’t get ruined by liquid. 

Cell Phone Locator Feature

The third thing to do is to turn the location tracker on your phone and your tablet. If you get lost, the police can find you easier. If you don’t know how to turn it on, look in the settings or ask someone who knows how to do it. I think it can save your life.

Communication System

If a person tries to help you, try to show them where your cards are. You can try pointing to them. If you have a communication system, I would write a few sentences about you and how to communicate with you. Actually, I would have what you wrote on your cards in your communication system in case the cards got lost. Put this information where you can get it easy. If you are like me, I have folders within folders which makes things hard to find. I have my information on the top level of my communication file structure.

Going Out

I am noticing that people with disabilities don’t feel comfortable going out by themselves. It is understandable but you have to be an adventure in your life. I never was scared to take walks and I had no problem with crossing a busy road. The only thing that I was scared was crossing train tracks when I was living with my parents. I told myself to try to cross the tracks where there was a lot of people around. Once I tried that, I didn’t get worried about doing it again. You have to push yourself in trying new adventures if you are nonverbal or not.

If you have overcome something and are doing it on a regular basis, please tell us what it was and how you overcame it. People need to be encouraged to do it all.

Mental Health Month – Reducing the Stigma of Mental Illness

Mental Health Month – Reducing the Stigma of Mental Illness

By: Marie Miguel

Mental illness is experienced by one in five adults every year, according to the National Alliance on Mental Illness. It includes bipolar disorder, anxiety, and depression, the latter being the leading cause of disability in the world. And yet, one of the biggest challenges we face with mental illness is the stigmatization surrounding it.

As a society, we still have a long way to go in talking about mental health in a healthy and normal way, and this may be for a number of reasons. People who struggle with mental illness may feel great shame, guilt or weakness in talking about their illnesses or seeking help due to narrow portrayals in the media, or a complete absence of it. The lack of mental health education leads to the belief that mental illnesses are “phases,” can be controlled or can easily be overcome if only they tried. On a larger scale, factors like poor access to mental health care can also contribute to widespread stigmatization.

People with mental disorders already carry a lot of pain, and these things can further worsen it. What we need is more people having healthy and accurate conversations about mental illness and speaking up for those who struggle with it. In honor of Mental Health Awareness Month this May, here are 5 ways you can fight the stigma surrounding mental illness:

  • Educate yourself. Mental illness is prevalent: a study estimated that over 80 percent of people will experience it once in their lifetime. Something so widespread is deserving of our focus and education; the more knowledgeable we are, the more we will be able to help those struggling with mental illness and help dismantle its stigma this month and beyond. You can start by reading articles and fact sheets from trusted sources like the National Alliance on Mental Illness and Association of Depression and Anxiety. If you are someone with a mental disorder, you can gently express to others how it is for you to be experiencing it.
  • Be wary of the language you use. Language surround mental health is important and even small shifts in phrasing can make a big difference in social perception. For example, saying “He is a person with a disability” rather than “He is disabled” is a form of humanizing language that helps people understand that a person is not their illness, according to American Psychiatric Association. Be conscious of the way you use the words “crazy,” “psycho” or “anxious” which can contribute to the stigma. Furthermore, don’t be afraid to kindly educate others around you if their language is problematic and to remind them it matters.
  • Show compassion for those with a mental illness. People who have a mental disorder are often in a great deal of pain, even though they may not show it, and one of the kindest things we can do is to show them that they matter and that their feelings are valid. If you have a friend or family member who you know is struggling with a mental illness, show them your support. Gently encourage them to seek help from licensed, professional and supportive therapists that platforms like BetterHelp.com provide. Ask them how they really are often, and take the time to listen to what they have to say without judgment or criticism. Standing with them and validating their experiences is an incredibly life-affirming act, and will help reduce the shame they may feel.
  • Speak up on social media. If you see a social media post or advertisement which negatively or inaccurately portrays mental illness, add in your two cents or write to the broadcasting company. Sometimes, people are unaware that they are contributing to the stigma and are willing to learn what it really is like for someone with a mental illness. Says Facebook user Kathy Smith, “If Facebook has any stories where people make ignorant comments about mental health, then I write back and fill them in on my son’s journey with schizoaffective disorder.” This also means supporting organizations which work to break down the barriers in mental illness, such as To Write Love On Her Arms and NAMI.
  • Be honest about your own struggles. Perhaps one of the hardest things to do is to fight the stigma within ourselves. Shame, guilt, and fear are all reasons why we may not speak up about our own mental health concerns, and this can lead to further harmful thoughts surrounding it. Being honest with yourself and trusted friends and family, even though it may be very difficult, is one of the most powerful things you can do fight the stigma within yourself and others. Don’t allow yourself to wallow in shame, but make small, positive steps to normalizing your mental illness: acknowledge that it is a real medical condition, take your treatment seriously, and show by example what it means to live a meaningful life, even with a mental disorder.

Our culture and society’s views on mental health has slowly and gradually gotten better, but there is still much to be said and done. With education, persistence and compassion, we can positively change how we approach mental illness and dismantle its stigma entirely.

Does Smart Technology Truly Help with Independence?

Does Smart Technology Truly Help with Independence?

An increasing of installing smart technology in homes is growing daily. Everybody is buying things for their homes to making their lives easy and save money. Does smart technology help people with disabilities to be more independent

Smart Technology

What is smart technology anyway? It is a technology that turns lights on, locks the door, turns the TV on, and many other things from your smartphone or tablet. If you cannot turn something on because you cannot reach it, smart technology can help you with that. 

I know what you are saying – “but Chris, it is too expensive. “ Yes, it is a little expensive, but you have to look at the big picture over time. Let’s say that you have to leave a light on in a room where you are in some parts of the day. If you have a smart switch in the room, you can turn it off when you are not in there. First of all, you are saving on electricity. Besides, you are saving on buying bulbs in the long term. 

Smart Bulbs vs Smart Switches

There are many options for lights. You can buy smart bulbs or smart switches. A smart bulb costs around $25 and a smart switch costs around $35. Both are on Amazon. What would you buy? Naturally, you would say that you would buy the bulb because it is $10 cheaper. Well, that is not the right one to pick. I will give you several reasons why a switch makes more sense.

First, a switch usually turns on multiple bulbs. If a switch turns on four bulbs, you would have to buy four bulbs at $25 for one bulb so you have to pay $100 versus $35. Second, a switch will last much longer than a bulb. 

Philip said that their smart bulbs will last around 15,000 hours. They say it should last fifteen years. I have not seen a bulb last that long ever. So, you can judge for yourself. 

Getting Excited Yet

You might be getting excited about this technology, but you are wondering what you need to make your home smart. All you need is a secured internet and a tablet or a smartphone. The internet has to be yours and not your neighbor. The reason why you don’t want to use someone else’s internet is that they could turn on a device without you wanting it to. This would be very bad indeed. 

Apple has HomeKit and Google has their Google Home. Both apps work about the same way but I use HomeKit because I use an iPad. Home Kit comes with iPad, iPhone, and iWatch. I heard it might be in the Mac computer later this year

HomeKit

What does HomeKit do? It allows you to control the main functionalities of all your devices in one app. When you install a device, it will have you to download their app for the device. When you do that, it puts the main functionalities in Home Kit. You have to buy devices that have the Home Kit logo on the box otherwise it will not work with HomeKit at all. 

Automation

The true magic with HomeKit is automation. What automation allows you to put a timer on all of your lights to be turned off at a certain time. Also, HomeKit is smart that it knows when sunrise and sunset occur every day. You can say to turn on a light fifteen minutes before sunset. I find that to be really cool.

One thing that is needed to have automation to work is that you have to have an iPad or Apple TV at home all the time. The iPad has to be set up as a hub for automation to work. It is just a setting to be turned on in settings for HomeKit. 

Security

Let’s talk about safety for a minute. If you have a disability that requires you to have a personal assistant to get you up in the morning, you might give the person a key to get in. That might be dangerous but all of us do it. Well, this will be the thing in the past because there are smart door locks. They work basically the same way with any other devices. You can set a timer to unlock the door at a certain time. You could say what about when the power or the internet goes down. In my opinion, it is better to have smart technology in your home then being depended on other people. Yes, it is scary to adapt to change but in the long term, you will be happier.

If you are using smart technology in your home please tell us what you think of it. If you are not ready to take the plunge, what is holding you back? Please leave your comments below this post. 

Netflix “Special” Got My Mind Wondering

Netflix “Special” Got My Mind Wondering

I just ran across an article about a new Netflix show called “Special”. It is about a guy who has Cerebral Palsy and gay. The first show aired on April 12. I watched the trailer and to me, it was just alright. 

Ray O’Connell

The character who plays the guy who has CP is Ray O’Connell and actually has Cerebral Palsy. His CP is really minor – he can walk, talk, and use his hands. This show is based on his memoir: “I’m Special: And Other Lies We Tell Ourselves.” 

Although this show sounds great, I have a bad feeling about it. I don’t have any problems with gays but having shown with people with disabilities is really new to TV. So, people are getting comfortable with seeing them and learning a lot about disabilities.

Issues With “Special”

My issue is that we are forcing to watch a show that would be a great learning tool for everybody, but if you are religious and are practicing your faith, how can you watch something that is immoral? You can say: “Oh Chris, get with the times.” Should my faith change because society thinks it is OK? I think not. I have to be true to my beliefs.

At a conference a few years ago, I talked to a guy at a conference. He was a person with a disability and transgender. The guy made a statement that stuck with me. He said that the gay community should include people with disabilities because we are fighting for equal justice. I see his position to a point, but the disability community is so different. Our lives require things that are important to us. If I don’t have help every day, I will not get out of bed.

Marriage

They wanted gay marriages legal. My question is how are their lives different from two people living together? If you think about it, it is the same thing. People live with each other for many years and don’t think of asking for help from the government. Marriage is between a man and a woman period because it is how God wanted it to be. I know that there will be some people who will disagree with me, but I don’t care because it is the truth.

Some Thoughts

The show “Special” might be great, but it doesn’t have to force the gay lifestyle on me. Most people with disabilities seem to be straight. I am not saying all are straight. A ton of people with disabilities is looking for dates and marriage. Wouldn’t that be a great plot for a show? Hollywood is full of gays, so they think everyone is gay which is not true.

Time has changed for the better for people with disabilities but why do the gay community want to take over everything in our lives. I know some people want to be heard, but how far is too far? This show might be about Ray’s memoir, but they could cut out most of the gay things out. If I wrote a memoir and someone wanted to turn it in a series, but they wanted to cut some parts out, I would understand. Would I be mad? I think yes, but if some parts were deleted to get more people to watch it, I would say sure.

What Do You Think?

Life has good points and bad points, and nobody can receive everything they want. Yes, it hurts, but we all have to adapt to things. Special might be an awesome show, but should we accept the gay life style in every show? If you have a different view on this show or the same view as me, I would like to know your reason for your opinion. Put your comments below this post please.

Surprised By a New PCA

Surprised By a New PCA

What if your case manager just changed your primary personal care assistant (PCA) agency on you without telling you, what would you do? If you are not familiar with me, I live on my own in a building called Katharine Manor Apartments. I hire my own aides and pay them. So, I don’t have a case manager, but a lot of the residents do have a case manager. Some of them have the same case manager and one day they received new PCA’s from another agency. 

Man in wheelchair talking with a potential aide
Man in wheelchair talking with a potential aide

What Would You Do?

What would you do if you woke up seeing a complete stranger in your bedroom? I know what I would do. I would crap in my pants and hope that I was having a bad dream. About five residents experienced this shocking event. If this happened to me, I don’t know what I would do because I am nonverbal, so the person has to know how to communicate with me. All the residents, who were affected by this tragedy, could talk. That is one good thing.

This has been several days since the change has taken placed and proper training has occurred. Most of the residents are still not happy about this change and are fighting it. The staff here at Katharine Manor found out at the same time as the residents. They were dumbfounded as well when they found out too. 

Reality Set In

Now let’s just talk about this in general terms. Was this right at all? The answer is obviously NO! It was wrong on so many levels. How they found out was appalling. Some of the residents found out the night before. I could see if the staff here at Katharine Manor were on strike, but they weren’t on strike at all. 

If this happened to you, what would you do? To me, it is so crazy to think about because you are in a building where you are taking care of and you trust them to take care of you every single day. The trust should not be broken at all. If one of my aides is late, it is one thing, but if they don’t show up at all, would I keep them? The answer is no. It is the same thing here, but who do you get mad at? Your case manager or Katharine Manor? The answer is so difficult to say because the case manager works for the state. If Katharine Manor fought with the case manager, the state could just close the whole building. This was on the board’s minds when they found out.

Who to Blame

The case manager was completely at fault. We are all human beings and make the wrong decisions throughout our lives. I am not here to say that this person needs to be let go. Maybe the person heard something and felt that he or she had to “save” the residents from something. I don’t know what really happened, but one thing that I know is this should not have happened. 

We as people with disabilities need people who can look out for us. When I was a lot younger, I thought I could handle everything myself, but as I get older, I am noticing that it is better to have somebody to look out for us. I am not saying that we cannot do that ourselves, but it is to be safe than sorry. If you have your own thoughts about this, please tell us. There is no wrong solution to the problem.