Social Discrimination

 U.S. Government and Social Media

Wow. I just read an article on Facebook by the site The Mighty, a site to inform and empower those of us with disabilities. The article I read stated that the government now wants to look at our social media pages as a way to determine whether we are “disabled enough”. This is horrifying.

As I read this article, I began to think about what I post on social media. I post pictures of myself taking part in races with my handcycle. I love using my handcycle. It keeps me physically and socially active. It also gives me a sense of accomplishment and pride, which everyone likes to feel. Am I going to have to stop posting these pictures for fear of losing my disability benefits?

I agree that the government needs to monitor who gets Social Security Disability, but as a person with a disability, I find this proposal very invasive. Just because we are disabled doesn’t mean we have to stop living. By looking at my social media page, it looks like I am quite active and have fun, which is true. However, what my social media page does NOT show is now badly I hurt after physically exerting myself. The reason I do this to myself is to keep myself active in all ways so that I don’t become completely isolated from the world around me.

A couple years ago, I was sent several packets of questions by Social Security asking me question about my functionality. One of the questions wanted me to explain what I do from the time I get up to the time I go to bed! This varies from day to do depending on how I feel and what I have planned for that day, (just like everyone else.} What this question didn’t take into consideration was whether I woke up hurting, whether I might be nursing a pressure wound from simply walking too much one day or the fact that I am mentally drained from someone having to explain something to me yet again because of my learning disability.

I have talked to and become friends with people on Facebook who have similar disabilities to mine, and others who have disabilities different from mine. We all have different abilities and disabilities. This applies to non-disabled people as well. Don’t judge us on what you see on our social media pages. Get to know us and what we go through on a day to day basis before you judge what we are and are not capable of.

As for me, I am only able to stand for about 20 minutes, while hanging on to something, because my balance is off and my muscles start to ache. If I overdo it, my back KILLS ME by the time I am able to sit and relax. This pain can last anywhere from a half an hour to days depending on how much I over exerted myself. Being on disability enables me to do what I need to do and have the ability to take care of myself.

Judging people on the basis of what they see on social media is discriminatory. Not all disabilities are visible and should not be judged as such.

Has anyone else heard about this? Have you experienced this kind of thing yet? Let’s share any information we come across on this subject so we can fight this discrimination!

This is a blatant form of discrimination and it needs to be addressed. I would like to encourage everyone, including individuals with disabilities, their caregivers, even their case workers to contact your state and/or federal government representative to voice your concerns on this subject. Below you will find a link to the article I got my information from and also a link to find your states representatives.

Elected Officials

Let Me Fail

As we grow, we learn to do new things. Sometimes we get it right the first time. Sometimes we don’t, and that’s okay. Failure is all part of learning. Learning can be especially difficult for some individuals with a disability. However, being disabled does not mean we are incapable of learning, we just need a little more time and patience. Slowing down and explaining things to someone with a disability will help them understand and retain the information and process it better. It has been proven that everybody learns in different ways. Some are visual learners, some are auditory learners, and some are more hands on, or a combination of these.

A FB friend of mine had gotten a cubical shelving unit for his bedroom that needed some assembly. He had wanted to put it together himself by looking at the directions carefully. At one point, his father came into the room and saw that he was having some difficulty. Instead of coming in and offering some help, his father basically said, move out of the way and he went ahead and put it together instead of taking the time to show my friend the right way to do it and working on it together. This left my friend feeling “broken” like he wasn’t smart enough or good enough.

When I was taking the LAST course to finally get my associates degree, I had major difficulties because it was a math class, which has always been my worst subject. I went to tutoring, I met with the professor before and after class, I consulted with the Disabilities Coordinator at the college, all to try to get through this class. I would complain to anyone who would listen.

One day, when in college, I was supposed to take a test. My anxiety level was through the roof! I got to class early that morning, so I could do some last - minute studying. Soon after I got in the room, the professor came in. He could see I was upset and asked what was wrong. I began to cry as I told him about how stressed I was over the class. He asked me if he could tell me something. I said yes. I figured he was going to say what everyone else has told me, that I needed to just try harder etc, etc. Instead, he told me that he admired me. He said, “Here you are, in your 40’s with a disability, still trying to get your degree and have not giving up.” “I commend you for that.” This meant the world to me. He reassured me that I WAS in fact passing the course and that I would be getting my degree.

Having someone take their time to help us learn something new means everything.  It helps us to learn new things number one, but it also helps to boost our confidence and sense of pride. This can be invaluable to someone who has difficulty learning, so please, be patient with those of us who struggle to learn, it means the world to us.

I would like to encourage anyone who would like to, to share their own similar experiences, so we can all learn how to handle this sometimes, touchy subject.

                         

Put Down Your Rock! - Re-post

I first posted this to my blog back on December 1, 2015. I had SO many people tell me how much it helped them I was overwhelmed. I would like to share it again for those who may need some encouragement. I hope you all enjoy it and possibly find peace in something you may be struggling with.

Thank you.

As we go through life, regardless of whether we are disabled or not, sometimes things happen that bother us. It could be something someone said to us, the way someone acted toward us, or maybe it was the way someone made us feel.  These things can have a negative effect on us which can be physical, mental or emotional.

 I am pretty good about letting things go and moving on. However, there have been a few things that have bothered me and I just couldn’t let them go no matter how hard I tried. Every time I saw a certain person, or if I am in a similar situation where the incident occurred, it brought back memories of a not so nice time or event in my life.

 A few years ago, I took a very interesting class. One day our teacher asked us to bring in a rock with us to our next class, but wouldn’t tell us why.

The next day, although I was somewhat confused and yet intrigued as to why we needed these rocks for class, I went out in my yard in search of a rock. I found one. It had light, medium and dark gray lines through it. It was somewhat pyramid in shape. It fit in my fisted hand. I liked it.

At the beginning of class the next day, our teacher told us about an experience she had when she attended a Native American ceremony.  The leader of the ceremony asked everyone in attendance to find a rock just as she had asked us to do. Once they had their rocks, they were asked to think of something, someone or an experience they had a hard time dealing with. At the end of the ceremony, the participants were asked to place their rocks in a pile as a symbolic way of leaving their issue behind.  Our teacher wanted us to do the same thing.

 Although I didn’t want to confront this issue, I thought this was a really cool idea and I really got into it. I slept with my rock right next to my pillow so I would see it as soon as I woke up and kept it in my pants pocket during the day so I would feel it pressing against my leg to serve as a constant reminder of the issue I was letting bothering me so badly.

 During the week, I thought a lot about the issue and I tried to analyze why I was letting it bother me so much, how it was effecting my life, and what I could do to handle it better. Being reminded of the issue by the rock constantly pressing against my leg, I was able to realize that the issue really wasn’t that big of a deal. I needed to put down the “rock” and move on. It wasn’t worth it. Once I came to this realization, a huge weight was lifted off of me.

Sometimes the “rocks” that we carry with us feel more like boulders and letting go isn’t as simple as just putting them down. Sometimes the rocks get thrown back on us and we end up having to pick them up again. It sucks when this happens, but we need to make sure that we don’t let these rocks weigh us down to the point where we feel trapped and cannot get out from under them. If this does happen, we need to realize that it is time speak to someone whether it is a trusted friend, a family member, clergy, or counselor. It is okay to do this. It is okay to admit we need help. Asking for help allows us to see our issues from a different perspective and assists us in putting down our rocks.  I would love to hear from people about how they handled a difficult situation and how they were able to finally put their “rocks” down.


Thanks.

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This is an amazing informative article on the future of Spina Bifida. A must read, in my opinion!

https://www.thedailybeast.com/spina-bifida-could-vanish-with-this-experimental-fetal-stem-cell-therapy?source=TDB&via=FB_Page

Assistive Technologies you may find helpful

This past weekend, I attended the Abilities Expo in Edison NJ. While I was there, I had the opportunity to speak with a couple people from an organization called Advancing Opportunities. This is an organization that provides many types of services to disabled people and their caregivers. I was especially impressed with their Technology Lending center. This program allows people to borrow different types of assistive technologies to try out before investing money into something that may or may not be appropriate for their needs or their child's needs. I also asked if other states offer similar services, and they do. I have provided two links below for your convenience, the first one being for my home state of New Jersey and the other for the services offered in other states. I hope you will find this information useful.

http://advopps.org/

http://www.atconnects.com/at-act-programs

https://www.youtube.com/user/assistivetechcenter

See ME!

I am amazed at how rude and disrespectful people can be toward the disabled. Too many times I have heard stories of disabled people who have experience situations like this. Contrary to what some people believe disabled people are not invisible or stupid.  It’s no wonder some of us retreat from going out in public or don’t even consider applying for a job for fear of rejection or disrespect.

While talking to a couple Facebook friends, they were telling me about their jobs. One friend, who has Cerebral Palsy, was treated as if she was not even there some days. She was given less and less responsibility and eventually pushed out of her position. This is someone with a bachelor’s degree.

Another friend, who uses a wheelchair, works for a movie theatre in his area. He’s the guy who rips your ticket in half and directs you to which theater your movie is showing. He tells me all kinds of stories. Some are funny or interesting, while others are a lesson in patience and self - control. He gets talked down to, ignored, disrespected and even tripped over!  People walk right past him without stopping to get their tickets ripped, he gets talked to as if he doesn’t know what he is doing or in a very patronizing manner. And my favorite example he gave, “Oh, I’m sorry. I didn’t see you there.” Seriously? You can’t see a big ‘ol power wheelchair right in front of you?!

I have noticed since the introduction of the Americans with Disabilities Act, people are responding better to the needs of the disabled. More consideration is given when we apply for jobs and with regards to accessibility into areas of the community. But we still have a long way to go to truly be accepted into the non-disabled world as a whole.

I would like to encourage all of you to share your experiences on this topic so we can learn from each other and find ways to handle situations like these in the future. Thanks. 

BREATHE!

            “How do you ever sleep again, once your spouse has suffered a heart attack and is now home with you? I feel so responsible for his wellbeing, now that he is lying here with me… no nurse, no call button no machine monitoring all aspects of wellbeing, no sense of security that a hospital offers. I’m just not sure I will sleep, or as soundly as I’d like. :::sigh:::” ANH

 

What a profound statement. This was the reaction of a friend when her husband came home from the hospital after suffering a heart attack.

When I read this, it really hit me. How do you ever sleep again? In an instant, your whole world has changed forever.

BREATHE!

Sometimes life doesn’t go as we planned. A heart attack, a loss of a loved one, a disability. These can all be devastating. You feel paralyzed Why is this happening? A million thoughts go through your head. What if this happens? What if that happens? How am I going to get through this?

BREATHE!

Take a few minute to just sit and collect your thoughts. Write down what you are thinking. Make a list of questions you have for the medical professionals. Talk to the doctors, the nurses, the therapists. Talk to others who have been through it.  They can give you a been there done that perspective on things. Gather as much information as you can from anywhere you can. You can do this!

BREATHE!

There is a saying, “You never know what you can do unless you have to do it.” You have to find a way to get through this. This is your “new normal”. Create a support system to lean on and use it. You will be surprised how many people are willing to help. Things will be okay. You got this.

 

                                                 BREATHE!                                                

In my case, I was born in 1966. My mother was 43 and my father was 46. This was considered old to have a baby at the time. My father was mad at himself because he didn’t think that my mother needed to be pregnant at the time. My mother was concerned about her own health and my health as well.

For one of my college classes, I had to write an autobiography. This was a great experience for me. Being the youngest of five ranging in age from birth to twenty - three at the time I was born, I was able to get insight from them, as well as my parents.

My two older siblings were in seminary and college at the time I was born. My brother in seminary expressed concern for both of my parent wondering how they would be able to handle the pregnancy given our parents ages. When I was born, it was discovered I had Spina Bifida. This was devastating news to my whole family. What now?

BREATH!

At the time of my birth, the medical community was still working on developing treatments for infants born with Spina Bifida. I was born with the normal complications of Spina Bifida, open spine, bowel and bladder incontinence, orthopedic problems. In addition to these issues, I was also born with hydrocephalus (build-up of cerebral spinal fluid in my skull). This issue does not affect every child born with Spina Bifida. 

Things were touch and go for quite a while. I was in pretty bad shape. I had spine surgery almost immediately after I was born, I had a shunt placed in my head to control the hydrocephalus. This had to be replaced a few days after it was placed due to a malfunction. I even stopped breathing once. I was told a member of the medical staff had to perform CPR on me.

Things in life don’t always go as we planned, but there is always a way to get through them. Family, friend, loved ones and of course faith in God will always see you through the dark times. Just step back, take it all in. Things will be okay.

BREATHE!

I followed up with my friend about her husband’s condition. She told me that he has some degree of depression and anxiety. The doctor said this is normal for what he (they) have gone through. She also said that this has been a life altering experience, but they are getting through it. Amen.