We all say that this guy is good looking or this child is so cute. These comments make a person feel good about their selves and they long to hear it. But there are times when people say things that are really degrading to a person. I found a great podcast called “Advocate Like a Mother”. The host is a mom who has a boy with Down Syndrome and she interviews moms who have children with disabilities. This episode that I heard was with a mom who has a daughter who has facial distortions and many other illnesses. She needs nurses around the clock.
When the parents take their daughter out, they get people looking at her and say how could they keep her. She should be dead and among other things. At first, the mom did not know what to do because it was all new to her. So, one day she had enough and it was time to start living and start advocating for her daughter. Slowly she started to do interviews and is starting to give talks.
Doing the Right Thing
In South Carolina where they live, they had a bill coming up for a vote to decrease funding for children who need nurses around the clock. A group asked this mom to talk to the state government about her daughter. She was scared but she said yes. That started a community following her on social media.
Her social media has grown to a point where she is getting requests for different equipment for different families around the world and her followers are giving money for the equipment. She sends them to the families for free. So, she is doing a lot of good for people, but she is also getting a lot of hate mail.
The mother is using Twitter for her main platform to get her message out. She noticed when she tried to report the bad comments that she was getting, Twitter didn’t understand what her platform was. There was no platform for parents with disabled children so when she tried to report something, she was asked the same thing over and over. She got Twitter to add this group to their app, and now she is trying to get the other social media outlets to the same. It will happen sometimes she said.
My Own Facial Disortions
I thought about this for a few days now and have a few thoughts that I would like to share with you. I make facial distortions especially when I am stressed or uneasy. Last Saturday night I went to a festival and my body got tight so my mouth started to distort. I don’t know why. So, I get looks and rude comments too. It hurts bad, but you can hide in your home or say I have one life to live and I will do my best.
Look Beyond the Body
As I think of it, this mom is like my mom. They were scared what they needed to do, but when they got the momentum going, nothing can stop them. It is the same with everything – when you find your passion in something that you believe, you cannot be stopped. I have to be passionate in something that I am called for otherwise I cannot go forward in it.
Life is a bowl of cherries but sometimes it is so cruel. We have to educate society about our lives with disabilities. I am not saying that people will change their attitudes to us. Facial distortions can happen to anyone so people have to look beyond the looks into the person’s heart. The people with facial distortions are human beings who deserve the respect and the love that everyone wants. Do you think that we should look beyond the physical body and really look at the person’s heart?
This past Saturday night I went to my 30-year high school reunion. Yes, I am that old. I went to it not expecting too much because it was in a big group, I feel I am left behind because it is too noisy.
When I got there, it was in a small room in an Irish pub, and I thought ok this would be a short evening. So, I found a place to sit. One by one, people were coming up to me and talking to me. Some of the conversations were short, but most of them were long and interesting. One surprising thing was that was the long conversations were with people who saw me in the halls but never had classes with me.
When people said that they saw me in the halls and wanted to know me, I thought what if we had email and social media back then, what would it be like to have more friends? In my head, it started a chain of questions. I am not going to tell you what the questions were because I feel uncomfortable. If you know me from reading my blog posts over the years, you might know some of the questions.
It felt great to talk with women my age. I don’t mean that in a romantic sense, but I could see a few hanging out together. Hey, people do need friends. Right now, I am looking for friends.
Friends With Disabilities
One thing that I am kind of sad about is that there weren’t more people with disabilities. I attended all three high school reunions so far and I was the only person with a disability there. Am I disappointed? Maybe a little – I know it was difficult to make friends in school. It doesn’t mean that you won’t have fun at your reunion.
Your High School Reunion
If you have a high school reunion coming up or a junior high school reunion, go to it because you might have fun there. You never know what you might run into. Also, dress nicely – I’m glad that I dressed sharp and I had a few compliments. People were in all types of outfits. You had guys in shorts and one in a sports jacket. With me, I always want to look sharp because I might meet someone who could give me a speaking opportunity. At the reunion, I met a woman who works with students with Cerebral Palsy. I don’t know if the opportunity will happen but I was ready to make my pitch to her.
Looking back on the high school reunion, I could have not gone to it or gone and had fun. I picked to go and had a blast. I hear too many people with disabilities saying crowds are not for them so they will stay home. We have one life to live and for me, I want to make the most of it. Don’t you?
I ran across an article about a woman who has MD and is in a relationship with a man who is able-body. She was asking him questions about their relationship. His answers were well thought out. He was her caregiver too. This was really unique, to say the least. When a person with a disability is in a relationship, the person is usually a man who is disabled.
A woman is more equipped to take care of a person. I am not trying to be rude, but God gave the woman the ability to have kids and nurture them. You might look at it as a gift, not something that you desire. I am also not saying that this guy cannot be a great caregiver.
My mom had Alzheimer’s for over ten years and my dad took care of her. He loved her very much and it showed through his actions toward her. For example, she ate really slow. I mean two or three hours for a meal. He used to feed her and watched TV or did some cleaning.
Personal Care Assistants
People usually think that taking care of someone is a job. That is not always the case. If a person does it as a job and does not care for the person with the disability, the aide won’t show compassion toward the person with the disability. I will give you an example of what I am talking about.
I have currently three personal care assistants working with me. They like working with me because I treat them like friends which they are. We have to give and take while we work together. There is a mutual understanding between us. It should be in every relationship no matter if there is a person with a disability or not. If somebody is always giving and does not receive, the relationship will fall apart. On the other hand, the place where I live has caregivers who do not like their job and it shows. If you pass them in the hall, they don’t notice you. I am not saying that they have to be your friends.
Living with Love
It is strange how different people react toward people with disabilities. Some people can fall in love with a person with a disability and take care of them like it is nothing. Other people act like it is torture. Do you know why? I truly believe it is how they were brought up. If you were taught that everything is a gift and you should be grateful, they will be compassionated toward the individual. I am not saying that their life was perfect rather their lives might have been totally hell, but their parents taught them a lot.
We all know that life is not a piece of cake for sure, but we have to live life with love in our hearts. If we don’t do that, how will we interact with others when we need them to help us? We might keep losing the help that we truly need. Looking back on the article, the couple knows what love is. The guy understands how MD effects a person so she might not have many more years to live.
Talk About Your Disability
If you fall in love, you should be opened with your disability with the person. Yes, it is scary to do because you might not know how this person will react. The person might be alright with what you tell them or they might say wait a minute, I don’t think this is something that I can handle. Sometimes the person might not know what to think, which is alright. You have to start the dialogue sometime. In my experience, it is to start the dialogue a little and let them ask questions when they are ready. You don’t want to force your disability on them. You never know what could happen to your relationship. It might turn into love or not.
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?
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.
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.
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.
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.
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.
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.