Elsa and Albanism

Sadie is a kindergarten girl who likes pink, hates brussels sprouts, and can get a little jealous of her younger brother. She's just like any other five-year-old girl, right? Except there is a difference, and it's name is albanism.

Sadie was born with very little pigment in her hair, skin, and eyes. This means she not only has low vision, which makes any child feel massively different. She also looks different. Sadie may be a beautiful little girl, but that doesn't mean she's automatically accepted.

photo of Sadie, from the article linked at the bottom of this post

People with albanism have been judged throughout history for being different. In some areas of the world, there are legends that say their bones are magic. In others, myths say they are spawns of the devil. In my experience, knowing a few of these 'albinos' myself, they are just like anyone else. The only difference is the pigment.

Luckily, children of this upcoming generation are starting to realize that. But how can an entire generation learn this at once?

Elsa from the acclaimed film Frozen has snow white hair. And she is popular. She is talked about constantly. Almost every child I've met in the last three years knoww about her.

Okay, that's great. But why does this help children with albanism? It helps, because Elsa looks different (with her white hair), but she is a fully fleshed out character. She has likes, dislikes, emotions, and fears.

Elsa fears being different.

So when Sadie's mother brought her to her first day of kindergarten, and the little boy behind her in line said, "Hey! You have hair just like Elsa!" it may not be exactly accurate. (Sadie doesn't have magical ice powers of course.) You know what it is though? It's a sign.

That little boy didn't point and say, "Why do you have hair like an old lady?" or "Your hair looks funny!" And none of the parents looked at her and said, "Did you bleach her hair?!" or "Wow! She is blonde!"

No, they looked at her, and they thought of a person. Even if that person isn't Sadie, it's a major step closer than just focusing on how 'weird' her hair is. Her peers will look at her and know her as a character, not white hair.

This is why we need more disabled characters in mainstream media. They take us disabled people from our tools, our unique appearance, or our accommodations to people. Fully fleshed out people with feelings.

So thank you, Disney, for helping a whole group of little boys and girls know that it's okay to have white hair.

Original article
www.bbc.com/news/disability-35967072

A School was EXEMPT from the ADA?!

A school in New Jersey was exempt from following the ADA on religious grounds.

Alright, I'm going to start with the facts. In September 2014, a lawsuit began against a Quaker school in New Jersey. The school is called Haddonfield Friend's school, and it was sued because a boy who was diagnosed with attention dysfunction and dyslexia was expelled after only attending the school for two years. His mother claims that they did not provide simple accommodations for her child.

The judge ruled that the school was exempt from the Americans with Disabilities Act. The ruling directly states that Haddonfield Friend's school, "is excluded from the ADA and New Jersey Laws against Discrimination."

The ADA currently excludes religious organizations, which in a very small amount of cases I may understand to an extent. In this case though, I don't.

Maybe I am ignorant? If so, please enlighten me. How does helping a child go against your religion?

And more importantly, how does not helping a child better serve and represent your religion?

I will not jump to conclusions, but I must point out that many children are denied services and have to fight for them. The difference is that most children are in public schools, where IEPs are mandatory and they are subject to the ADA no matter how much they cry. Likely, this school did the same thing. This time, though, they didn't have to give in.

The child, Sky, is 12 years old. How horrible this must be for him! After all the struggles a child has to go through to get to 12 years old without a diagnosis and then be discriminated against the moment he finally has an answer? Disabled kids, especially disabled preteens, don't want to be different. So don't treat them like they do.

Supposedly, Sky's mother asked for simple accommodations like extra time when taking tests. I have this as an accommodation myself, although I no longer use it very often. When I was younger, before we found the tools I needed to help me see what I was doing better and found ways for me to focus, the extra  time gave me a level playing field with the other kids in the class. I got good grades, but that was because I knew the answers, not because I had more time.

I think that this is a very important issue, but I also have a worry. I don't know if it's the article or the way the actual case is going, but it seems that Sky's mother is focusing a lot on proving that the school is not religious. I don't know if that should be the focus. I personally don't think bringing the religiousness of a person or system into argument will ever do anything but start wars. It can't be proven, and it offends everybody involved at some point.

That said, I don't have a much better way of approaching it? Honestly, I'm not sure that anyone being exempt from the ADA is constitutional. Because disabled people have a constitutional right to practice religion just like anyone else. What if this mother doesn't want to send her son to a public school, because she believes it has bad values?

What's next? Churches refusing to put in ramps, because they don't have to? Another school taking a child's white cane away from them...

Oh wait. That last one already happened.

Basically, I want to address the downward spiral that is loopholes and arguments over the ADA. We need a new law. An updated law that truly represents all disabled parties and that others can follow and need to follow.

Links:
http://www.rawstory.com/2016/04/quaker-school-wins-religious-right-to-discriminate-against-special-needs-kids/
http://abcnews.go.com/Health/school-takes-blind-boys-cane-punishment-acting/story?id=27702312

AT&T and an ADA Break?

The AT&T company has been subject to a lawsuit from the EEOC after unlawfully firing an VI employee.

Miguel Meléndez began working for a New Jersey based company in 2001. In 2008, he lost sight due to diabetes. He is now considered visually impaired.

AT&T took ownership of this company in 2009. In the same year, Meléndes was cleared by his doctor so that he could return to work.

Meléndes required accommodations to do his work efficiently. If these accommodations were to be filled, he would be qualified to do his work just as well as he had done from 2001-2008.

Instead of helping Meléndes, AT&T did not allow him to return to work.

Due to this misstep, they have been sued by the Equal Employment Opportunity Commission (EEOC). Today, they settled the case.

AT&T will be paying Meléndes $250,000 and offering him a position in a location in Puerto Rico. There, he will receive the accommodations that comply with ADA standards.

The office will also receive annual training. I assume this relates to the treatment of disabled workers, though this wasn't specified in the article I read. There are other terms in the settlement that are unlisted in aforementioned article.

Though this is definitely better than nothing, I do wonder how convenient a move to Puerto Rico will be. I admit that I don't know a good lot about this case at this time, so I suppose this may not be a concern to the parties directly involved, but I wonder.

Also, though these "training" sessions will likely be good for the workers that receive them, will they only be given in the office where Miguel works? I feel that it is necessary they work with the people who previously made the original misstep and those that were working with him at the time and may have been influenced negatively by watching this.

For those who many be wondering why he didn't just go off and find a company that would accept him, I'd like you to consider the fact that 80% of visually impaired people in the united states are unemployed. It is very difficult to find a job as a disabled person.

This trial may have not been the best or the worst for either side, but it is bringing light to an issue which we face every day in the blind community. We see ourselves and our friends discriminated against every day, and it's okay to stand up for yourself!

Echolocation as a Mobility Skill?

Seven month old Harlen Petersen was born with ONH and SOP. Now, he will be learning echolocation as a way of getting around.

Seven month old Harlen Petersen was born with Optic Nerve Hypoplasia and Septo-Optic Dysplasia, both congenital disorders which together affect the optic nerves, the brain, and the endocrine system. 

ONH is when the optic nerves (one or both) are too small. I will do a full article on this soon which I will link at the end of this entry. 

Septo-Optic Dysplasia is when the pituitary gland either is not there or does not fully develope. In Harlen's case, it is missing completely. 

Both diseases are associated with brain malformation, learning difficulties, and developmental delay beyond that of the average blind or sighted child.

On March 12th (2016), Daniel Kish will be making a journey to Harlen's hometown and giving him a lesson in echolocation. Kish is a world renounced teacher in this field. He explains the technique in his TED talk "How I Use Sonar to Navigate the World".

Echolocation is an ever growing area of discovery to the blind community today, yet I've heard little about it.  I've seen a documentary ("The Boy who can See without Eyes") and hear it built up. I've never met a user of the technique. My connections are familiar with variations of the long white cane and/or guide dogs.

Some claim echolocation is a replacement for mobility tools like a cane, and others disagree. Some believe neither to be a good option and are looking for high-tech fixes for navigating the world as a blind individual.

Whatever ends up happening I wish luck to Harlen and his family and want to assure them that this is the best time in history so far to be a blind person. We are very lucky to have the technology and support we have, and it's getting better all the time!

Original article: Human echolocation expert to pass on skills to baby Harlen

TED talk: How I Use Sonar to Navigate the World

Introduction

Hello,

This blog is for people who are....

• Blind/visually impaired
• Is going blind/visually impaired
• Knows someone who is Blind/visually impaired
• Is related to someone who is blind/visually impaired
• Cares about those of us who are blind/visually impaired
• Values the blind/visually impaired as human beings

If you fall into any of the above categories, you may find just the article for you on this blog! Here, we will be covering....

• Blindness in the news
• Tips and tricks to living with a VI
• Helpful tips for people who know a VIP (visually impaired person)
• Information about different VIs
• Blindie love! <3

Note that I will likely be a bit overly focused on articles that involve Optic Nerve Hypoplasia since this is what I have.

Oh, by the way. I'm Amanda. I've got ONH, and I'm here to be you guide through blindness!