The Disability Misconceptions Tag

  1. What is your disability and how does it impact you?  Well, actually I have three disabilities. I have Dyslexia which effects my ability to spell, read and sometimes write. Despite this, there are ways that I can achieve success everyday. I had training on how to read, write and spell with my condition when I was in Elementary school. The teacher taught me techniques to help me read, write and spell with confidence. On top of this, I use my Apple Iphone which includes the accommodations of, Siri and voice over. With these accommodations in place, I can write amazingly.   Another disability I have is mild Cerebral Palsy. From the time I was young until I was in middle school I have had countless Physical and Occupational therapy sessions. These sessions helped me gain strong muscles in my hands and legs and confidence.  Now the only time I really have a problem is, on a rare occasion, I get hand cramps from writing too much, or having a hard time opening a jar. Both of these can also be overcome. For my hand cramps I can over come it  by taking a short break, When it comes to opening a jar I can achieve this by using a gripping aid that you can find most anywhere. The most impactful disability would be my low vision, which is caused by a rare eye condition called, Nystagmus. To read more about Nystagmus click the link:  Nystagmus Tag (Nystagmus Awareness Day)   Nystagmus effects me on a daily basis. For me personally, Its like looking through a piece of clear Saran Wrap-So my vision is blurry.  To help me achieve success I use a screen reader, called ZoomText and an accessible print to text reader called Kurzweil 3000. With the use of these items I can achieve anything.  It also impacts my ability to drive. I have to rely on public transportation; and that’s okay, there are many people, like me, who have to travel with the help of public transportation.
  2. What is the most common misconception that you come up against with your disability?

For me I hear all the time, “You don’t look disabled.” this really hurts my feelings when people say this to me. I feel that people don’t understand the condition. The fact is there are a lot of people with Nystagmus who wear glasses, just like I do, and they can achieve amazing things.  Nystagmus effects everyone differently and that’s okay. That’s what makes each of us unique; and gives us all different kinds of strengths and weaknesses that we can work with.

3. What misconception annoys you the most?

I actually have two misconceptions that annoy me: The  first misconception that annoys me the most is hearing, “you’re visually impaired, so you must not able to do…” The fact is people with Nystagmus can do a lot of things, it’s just that we may have to have certain accommodations, such as a screen reader, to help us achieve success.

The second one is, “Oh, you have low vision, you must be on government aid.” The fact is the condition varies from person to person; and not everyone gets government aid, or they may get different forms of government aid.

4. Do you do anything to combat these misconceptions?

I do my best by trying to educate the public on Nystagmus and the kind of help that there is available to people like me. I’m not alone. There are support groups like the Nystagmus Network: Facebook page for the Nystagmus Network and The American Nystagmus Network: Facebook page for The American Nystagmus Network. With the right support, and by educating the public, a lot of the negative misconceptions  that are heard can be bursts like bubbles and the correct facts made available. This can help the disability community shine.

 

Advice for parents of children with visual impairments (tag)

Hi Blog world,

I came across this tag and I wanted to join in on this discussion. Here are five tips that may be helpful if your child has a visual impairment.

  1.  Stay positive: This one may be a given, however I found out over the past few years that staying positive makes things a lot more easier.
  2.  Teach self Advocacy skills early: My mother started to teach me self-advocacy skills when I was quite young, now as an adult I’m not scared to say what can help me see.
  3. Don’t be afraid to speak up for your child: My mother had to do this several times during my educational years and because she did I was able to get the help I needed.
  4. Learn about your child’s condition: This will help you understand your child and their needs early. Better yet, joining a support group can help answer questions and help you feel less alone.
  5. Lastly, don’t focus on the disability: In other words, don’t just focus on their handicap. Just like everyone else they have strengths and weakness  Let them find out for themselves what those are.

 

I hope you have enjoyed this post,

Blog soon,

Amanda Gene

Happy International Day of Peoples with Disabilities

Hi Blog world,

Today, December 3, is International Day of Peoples with Disabilities. According to the United Nations website, their goal is to help people with disabilities stay included in society and to educate the public about people with disabilities. I believe that everyone should have a right to a fair education and should be included in society no matter what their disability is. I also believe that educating the public is a good way to end stigma that sometimes is associated with people with disabilities.

To learn more about this day or the United Nations please visit: http://www.un.org/en/events/disabilitiesday/background.shtml

Blog soon,

Amanda Gene

A Day of Hope: Nystagmus Awareness Day

Hi Blog world,

As the title says, today, November 2, is Nystagmus Awareness Day, also known as “Wobbly Wednesday” to my British Friends,  it is a day of hope for me.

Nystagmus, for those of you who don’t know, is an eye condition where my eyes move back and forth. There is no cure for this condition, and its often misunderstood by the general public.

For people from our Nystagmus community we use this day as a fundraiser; these funds are used to help find a cure and the causes of the different kinds of Nystagmus (Congenital and Acquired) .  Not only do we use this day to help raise funds for the medical community; The Nystagmus community provides support for parents of children who have this condition, support for family members who may know someone in their family who is affected by Nystagmus, and peer-to-peer support for people who live with the condition.

For many parents whose babies are just diagnosed with the condition, they are concerned and want what’s best for their child; they often worry about their child’s future; for those of us who lived with the condition since birth,  we can offer tips and advice to help the child have the best possible future.

As for the people who have Nystagmus they offer peer-to-peer mentoring, which offers advice for things that may be a struggle, such as, not being able to drive, how to disclose their Nystagmus during a job interview and  other topics, with the peer-to-peer mentoring and the right support from teachers, parents, friends, family, and the medical community people with Nystagmus can have a full and active life.

For more information about Nystagmus and what you can do to support the community or  a loved one affected by this condition please visit:

http://nystagmus.org/new/

https://www.facebook.com/groups/65729508331/

Thank you for your support on the very special day.

Blog soon,

Amanda Gene

 

 

Happy White Cane Safety Day!

Hi Blog world,

I just wanted to wish everyone a happy and safe White Cane Safety Day!

This day is so important to me because when I need to I use my cane to help me travel safely in the community. Its takes a lot of skill to use a cane, I have to know where I’m going, and I have to use other skills, such as auditory skills to know when it’s safe to cross the street.

To learn more about the white cane law and how it affects me you can read my story at: Be aware of Blind Pedestrians it’s the law!

Blog  soon,

Amanda Gene

Current event #2-Work for people with disabilities

Hi Blog world,

I just read an interesting article about how the number of, people with disabilities, are getting hired. I like this concept because I have disabilities myself and I feel like it’s a good thing for people with disabilities to have jobs.

One thing that I wish this short article would have had provided was when the next report would be released.  Also, where to find this report would have been helpful because I felt confused because the article stated two different sources on where they got their information.  It just something I would like to see.

Here’s the link to the article: http://www.disabilityscoop.com/2015/06/05/jobs-may-15/20358/

What do you think about the rise of people with disabilities getting hired? What do you think about the article in general? What other information do you think would have made the article more interesting? Tell me in the comments below.

Blog  soon,

Amanda Gene

Compass directions…

Hi Blog world,

Yesterday, my teacher and I went downtown and we worked on compass directions, along with crossing streets, landmarks, and crowd travel.  I did well on my landmarks, crowd travel and crossing streets.  However, I am still learning the compass directions.  Since I have a good grip on the cardinal directions my teacher decided that I could start learning my sub cardinal directions.  This was very confusing to me at first but after practicing them I am getting a grip on this.

To make this lesson easier, we had our compass with us.  Sadly, “Bob the compass” was taken back to the store, and my teacher brought a new compass. The compass I joking named “R2D2” from the star wars movie, because the compass looked like that robot.

These compass directions will come in handy if someone gives me directions such as.  “The food store is at 123 East Street two blocks from the furniture store.”

Have any of you had to help someone who is visually impaired or blind by giving them compass directions? Tell me in the comments below. 

Blog  soon,

Amanda Gene