City with a wheelchair

Accessible living

I thought I share some of the adapted things my family and I came up with. These things were mostly built my father but designs or concepts by me. enjoy

The sink, we put the controls to the front side. This way my short arms could reach them and the sink works perfectly for the rest of my family!

The dining table was made using IKEA’s table legs and a large counter top my father cut to size. Then we put a two burner flat stove in the corner. We keep it unplugged until I use it. Other times it’s our dinning table and we’ll put the hot items on the stove to protect the table.

Other thing we did was put a small cabinet down low just to put microwave on top. It is not too low for my family and not too high for me.

Full discloser this is in New York and my father does construction for a living.

# ADA Standards for Accessible Design

# Home

# dwarfism

Moved

I moved about as far west as you possibly can, so most of these new post won’t be about New York City anymore. I moved to Honolulu yes thats in Hawaii.

I just haven’t figured out how to continue this blog. Since where I live they don’t have many sidewalks, this city is designed for cars not for people to walk around. Stay tuned until then, Aloha

A wheelchair user frustrated by the lack of ramps, went a head and use a 3-D printer to make mini ramps. Isn’t this pretty neat? Check out the article at New Mobility. Afterwards check out his site and read some of the comments.

Today is Morquio syndrome and related diseases awareness day.

Here are a few websites you can check out to learn more about my disability, morquio.

Carol Ann Foundation~ Im on the board of trustees and this where the medical research gets funded among many other organizations. you can also read stories about different people with Morquio syndrome.

Understanding Dwarfism ~ About understanding many disabilities. I wrote a small piece about Morquio syndrome.

Morquio Conference~ About gather Morquio families, and medical research. You can read some science papers, researches on this site.

MPS society~ this society set up this awareness day.

# morquio

# LP

# MPS

# Carol Ann Foundation

# Accessbility

# dwarfism

# Understanding Dwarfism

# medical

Summer time = blog time

I am back on a more regular schedule since I finish a semester of school. I am looking forward to writing more post on this tumblr.

A few articles and sites to check out:

Why I No Longer Apologize for My Crutches. by Natalie E. Illum. She wrote a strong article explaining how she come to accept her disability spastic cerebral palsy.

At New Mobility the magazine for active wheelchair users, published an article, Taming Our Fear of Flying, on the same page they have six articles all related to the world of flying and being disable. As someone who has flown a number of times i wished i had read these articles prior to flying. There are some awesome tips!

How Misunderstanding Disability Leads to Police Violence by David M. Perry and Lawrence Carter-Long. This article just makes my blood boil! I thought the police’s job was to protect us, lately i have been reading more and more articles how the cops aren’t keeping us safe.

Library help!

A little tip. My local library is loud and annoying so I just got a pin for my library card to go online and put the books on reserve. It just blows me away that I can pick out all the books I want and it will me waiting for me near the front door. Do yourself a favor go to nypl.org and sign up. that way you never have to worry about a book being too high or too low or something being in your way. Kudos to New York Public Library for making things more accessible.

fyi- you don’t have to be a wheelchair user to take advantage of the NYPL online.

It’s been a long time since I’ve posted. Life just has away of stealing me. Stay tune

Anonymous asked

Hi Maria, it's Shae. I just wanted to point out that I've found 2 restaurants that claim to be accessible but actually aren't because of stairs. One is Dallas BBQ on 72nd (and the staff are jerks about it), and the other is Fetch Bar & Grill on the UES (there are stairs leading to the "ADA acessible" bathroom). This makes me mad! But I don't know what I should do, so you're the boss. :)

Great question! If you ever happen to be at those restaurants again try taking a photo of the sign and the steps. That I could post on this blog. Sadly I haven’t heard of a 1-800 police for ADA to call about this. Ada does have a website you can file a complaint at. www.ada.gov

I’ll ask some of my friends what they do. I personally just blog about it and complain to the manager of the restaurant/ store. Thanks for being on the look out!

nycgov:

Update on the City’s response to Hurricane Sandy:

-There are buses at our 5 disaster assistance centers that will help people get to shelters and at Seward Park High School

-We have 25,000 blankets on the way to shelters in the Rockaways, Coney Island, and on Staten Island right now. To find a warming center near you visit http://www.nyc.gov/html/misc/html/2012/warming_ctr.html

-There are 1,750 schools in the city; the vast majority of them will be open Monday. Find information on school relocations at http://on.nyc.gov/U0sWBn or text ‘nycschools’ to 877-877. To find a list of schools that are serving as shelters and will be closed to students until Wednesday, visit http://schools.nyc.gov

-The Mayor thanked all of the volunteers who are pitching in to help. It really means a lot and it shows what a big heart New Yorkers have. To find out more about volunteering visit http://nycservice.org

-There are 42 families who have to cope with a terrible loss, and we should make sure they are in our prayers.

-If you’re without power, and you are using candles to light your home, please exercise extreme caution.

-Daylight savings ends tonight; remember to check the batteries on your smoke detectors and carbon monoxide detectors.

-The Mayor’s Fund to Advance NYC has raised $12 million donated by more than 3,500 people to support relief efforts, and money continues to come in. To donate visit http://www.nyc.gov/fund or text NYCFUND to 50555 to give $10 to the Mayor’s Fund that will provide essential aid and supplies to New Yorkers in need.

-There have been people who’ve sat in cars for hours trying to buy gas. It’s frustrating but this should be less of a problem in coming days. It may take a few days before you see the effect of the additional fuel supply at your neighborhood service station.

-Con Edison crews have restored electricity to more than 645,000 customers, about 70% of all those who lost power since Hurricane Sandy. While power to most of Manhattan is back, there are still tens of thousands of customers without steam power, and therefore without heat.

-Full service has been restored from end to end on the 4, 5, 6 in Brooklyn, Manhattan, and the Bronx. For more transit updates, visit http://mta.info.

↵ Reblogged from nycgov

It’s getting colder and that time of year where taking long walks aren’t as desired as they were… Time to find that warm indoor car ride. Some of you it maybe a no brainier how to get around but for those who use wheelchairs it’s a whole other challenge. I have always had to take a bus or rely on my family to drive, but now the options have expanded!

About a year ago I had called 311 to get an accessible cab. About two hours later finally a cab showed up… I tried them twice and both times it didn’t workout.

Last week I read an article, Hailing Wheelchair-Accessible Cabs posted in the New York Times about this new app called WOW Taxi for iPhones and Androids. I wasn’t sure if it would really work. I just had to test the app out and decided for my late tuesday night class, I’d try to get home via WOW Taxi app.

I downloaded the app, book a trip in the morning giving it my pick up and drop off locations for a Tuesday evening trip. I was ready 10-15 minutes early. I look at the app and it gave me the drivers name, medallion number, current location of the cab, and is updated every 20 seconds. The driver showed up ten minutes early! It actually work!!

I love it! The ride itself was a little bumpy partly because the driver tied down the front of my chair but not the back. You sit on a slanted ramp ground… But the fact that I managed to get in the cab, home safely and no waiting made it all good worth it.

My next cab ride I hope Mr. Amarjit Singh or his brother Vikrant comes and picks me up in his MV-1 cab. He apparently is the only owner/driver of a purpose-built wheelchair-accessible medallion cab in the city according to the NY times article titled A Cab tailored to Wheelchair Users.

Now I’ve more options of traveling around. Sadly the ride is the same price as for everyone else, (expensive) but it opens more options to traveling with in Manhattan. The yellow cab driver can take you to Brooklyn but not back to Manhattan. I hope someday I can do a full around trip from Manhattan to Brooklyn via public transport or cab, until then my father will still have to drive me.

Stay warm and safe travels.

Photo from: http://www.accessibledispatch.com

Saigon on Broome Street between Elizabeth and Mott. I love how they tried to be accessible. Please add another ramp.

I have been super busy lately and hope to find more time for this blog. Wish we could an hour to my day just for blogging. I love blogging! In the mean time please enjoy this summer weather and eat ice creams!

A store in a Soho located in a landmark building that has two large granite steps - making it un-accessible - has found away to welcome it’s wheelchair-using costumers.

I have always loved walking around Soho among the beautiful, historic buildings but haven’t been able to enter many of them. The efforts to protect the architectural and historic values of these buildings by the Landmarks Preservation Commission does not allow businesses to build permanent ramps for wheelchair users.

Purl Soho, a quality yarn and fabric shop on Broom St in the heart of Soho, has found a simple solution with their portable ramp - the same type my family uses to put my wheelchair into our car. Eager to learn more about their decision to provide this ramp, I sat down with Nikki, the store’s Operations Manager and a long time Purl Soho store employee. She recounted that when they grew too big for their little shop on Sullivan Street and decided move to Broom St, they originally wanted to build a ramp. Unfortunately, they soon discovered that in a Landmark building they weren’t allowed to build a permanent ramp. After a costumer complained on their website about their lack of accessibility in their new building, Purl Soho got in touch with her to see what they could do. The costumer told them about another store that had a portable ramp that folded when it wasn’t in use and suggested they purchase one. The ramp now sits under the window display inside the store and gets pulled out whenever a wheelchair user needs it.

Nikki also said that through this experience, she has become more aware of how difficult it is for a wheelchair user to navigate the city. She mentioned that her cousin is a little person and uses a scooter to get around, but unfortunately, her cousin won’t visit her in New York City because of the lack of accessibility.
Nikki thought there should be an “accessibility badge” that would go on business websites, search sites like Yelp, and in storefronts to indicate accessibility.

The story was very eye opening. There have been countless stores I’ve been interested in going into, but haven’t tried because of one or two steps. After talking to Nikki, I realize it is important to ask businesses to provide these folding ramps; the business gains many customers and I get to do more shopping!

There is a U.S. Post Office on the corner of 11th st and 4th ave that is not wheelchair accessible. It is misleading because the front is accessible but once you enter the building there are two steps. This is really sad because the lobby looks like there is enough space to install a ramp. It would make sense that they have a ramp in the back or side entrance to wheel in heavy and large packages, but it wasn’t made clear that this could be used for costumers who need to get into the building.

Busy as a Bee

Sorry I have not been posting a lot in the last few months, I didn’t forget about it! I recently became the Executive Director of the First Annual Morquio Syndrome Conference and I’ve been very busy organizing the two day event. If you have Morquio Syndrome, please send me your email. So I can send you an official invitation!

In the meantime, if you come across any interesting articles, blog posts or photos related to the issues of accessibility or disability awareness, send them my way and I will do my best to blog about it.