On Housing

My name is Alisa. I’m 34 years old, I am disabled, and I own a condo outright. It is not accessible by any means, to the point that I can do neither my own laundry nor my own grocery shopping without assistance and I frequently stay in, because I live on the second floor of a walk-up.

I have a walker that I keep in the basement have to carry up and down seven steps. When coming home, I have to walk down those steps backwards, pulling my walker after me. I’ve so far fallen backwards three times while doing that, and I’m scared that I’m going to die slipping down when the steps are icy this winter.

I’ve fallen down the main stairs a couple of times. Earlier this year my knee buckled and I fell down a full flight head-first into a stone wall. I lay there calling for help for probably 20 minutes before someone found me and called an ambulance. It’s a miracle nothing broke, but I almost had to go into a nursing home to recover because my knee was so banged up. Instead I was stuck at home in bed for a month until I could put weight on my knee again.

Health-wise, I cannot afford to stay in my home. Financially, I cannot afford to move.

At this point, I have three choices: I can keep my home and rent it out while moving into a new home I rent or buy. I can sell my home and move into a rental. I can sell my home and move into a new home I’ve bought.

When social services such as Medicaid, Medicare, and food stamps take your economic status into account, your primary residence does not count as an asset. Whether it’s a shack in the woods or a three bedroom townhouse, its assessed value does not impact your level of services. The moment you acquire a second property, however, that counts as a financial asset and if it takes you over a certain threshold of net worth, you lose most or all of your benefits. So the option of keeping this place and renting it out while I live somewhere else is thrown out.

If, on the other hand, I sell this place and rent somewhere else, well… The money from selling this place would count as a cash asset the same as if I owned a second property, and once again services get cut. So the option of renting period is flat out.

With the option of renting being off the table, that means I can’t do Section 8 housing, because the cash from selling would take me over the financial threshold for eligibility.

Now we’ve got two new options. Sell this place and buy a new one. Sell this place and rent somewhere using that money, which would mean losing my benefits. I’d then have to pay all rent, food, and healthcare costs out of pocket from the sale of my house until I’ve completely bankrupted myself, then apply for Section 8.

So I’m looking at new places, and I’ve found one – and ONLY one – place that is relatively accessible (so long as I never need a wheelchair full-time), on the bus lines, and allows pets. My parents would have to help me financially in buying it, and then I’d have to find a way to pay the condo fee. I still haven’t been awarded my disability so I can’t guarantee how much I’d be able to contribute toward condo fees, and my parents can only help so much. At this point the Housing Authority isn’t even taking people to be on the waitlist to apply for a Voucher. My parents’ best suggestion so far? Get a job.

What the fuck do I do?

I would feel bad writing this as some long, self-serving whinge, but the truth of the matter is that there are probably thousands of people in the United States going through the exact same thing. State programs and Federal programs that aren’t compliant with each other. Too many people living in poverty. Not enough houses built to be accessible in the first place.

What the fuck do we do? Because we’d better start changing things. Do you want your kids to go through the same thing I am? If we don’t start making important changes to legislature and how we as a society think about the poor and disabled, chances are your kids will go through worse.

90.5 WESA Celebrates People Making A Difference

I shall preface this in the most calm, cool, and collected way possible... My parents are both college professors. Growing up we only had basic TV channels, so all I watched was PBS and most of what we listened to on the radio was NPR. I don't have a television now, but when I go home to visit my family we get our news from the [formerly MacNeil/Lehrer] Newshour. The only podcasts I subscribe to are Wait Wait Don't Tell Me! and a couple other beloved NPR shows. What I think I'm trying to say is that I love Public Broadcasting and have a great reverence for the people who are important or interesting enough to be featured on any of its shows.

That said...

HOLY CRAP HOLY CRAP HOLY CRAP I GOT INTERVIEWED FOR MY LOCAL NPR STATION HOLY CRAP!!!!!

*coughs* Ahem. I mean to say... What an honor and privilege it is to say here that I was chosen for my local NPR station's weekly series featuring people in Southwestern Pennsylvania who make a difference through volunteer efforts and projects.

Anyone interested in listening to the interview may do so at WESA's website, linked to above in my explosive enthusiasm or here.  A thousand Thank yous! to Mark Nootbaar and to all of my friends who support me and encourage me to keep on chugging. You guys are gems.

The Greyhound Incident, or: You've Got To Fight For Your Rights

On Wednesday, June 8, I boarded a Greyhound bus from Baltimore to Pittsburgh.

Preface: I was making a trip from New Jersey by way of Baltimore, but due to a bus delay instead of having a three-hour layover it became a six-hour layover at the Baltimore bus terminal. When our bus arrived everyone was tired and cranky, including the bus driver.

As per the norm, when they finally called us to get in line I walked (using my walker) to the front of the line to self-identify as being disabled and needing help boarding the bus. Before I could even open my mouth the driver started yelling at me for cutting in front of the line. He walked me personally out to bus and told me to get a seat in the second row, then walked back to the terminal without doing anything about getting my walker or bags onto the bus. So I stood there and waited, and waited, and waited, while the rest of the passengers boarded.

When the driver came out he angrily asked why I hadn’t gotten on, to which I responded that I needed help getting my things on the bus and that my walker needed to be loaded in a certain way so the hinges wouldn’t jam (again). He told me to just get on board.

Once aboard the bus, I found that the second row was taken by people, but the first two rows, the official ADA seats complete with little wheelchair symbols sewn on the headrests, were filled up with the driver’s suitcases. I turned and asked the driver if he could move one of his bags so I could sit there. He started screaming at me. Literally screaming. He tried to get an 80-year-old woman to move from the second row so I could sit there. I said no, that was inappropriate, and that by law the ADA seats were there… for ME. He started arguing but I refused to move to a different seat.

The driver got off the bus for a moment, so I quickly grabbed my phone and started calling Greyhound customer service. Unfortunately there was a hold and during that time the driver got back on the bus and went ballistic about me being on the phone the whole drive. I told him that I had no intention of that, and that I was on the phone trying to call his supervisor. He told me his supervisors wouldn’t do anything, and that I was a troubled soul for trying to sit in one of the front seats. That’s when I turned on the camera on my phone.

Trigger Warning: Dude being an angry asshole. You’ve been warned.

He then got off the bus and went into the bus station to grab a supervisor and a security guard to try to kick me off the bus.

When the supervisor got on the bus, she talked to (a very calm) me to ascertain what was going on. She then got off the bus… and started yelling at the driver. He was angry, but realized that the supervisor wasn’t going to kick me off. In what I suspect was a play to at least maintain some semblance of power in the situation he insisted I delete the video, which I allowed the security guard to watch me do, and then he got on the bus and started driving with the instructions that I not use my phone during the trip because the light could blind him from driving safely.

You know how iPhones have that wonderful Recently Deleted feature that allows you to restore things you’ve put in the trash in the last 30 days? Yeah. It’s a wonderful thing.

I dimmed my phone as much as possible, angled it away from the window, and posted the video to Facebook and to YouTube with the following text:

BUS DRIVER IS TRYING TO THROW ME OFF THE BUS FOR WANTING TO SIT IN THE ADA SEAT INSTEAD OF HIM PUTTING HIS SUITCASE THERE. HE TOLD ME THAT I AM NOT DISABLED. I TRIED TO CALL GREYHOUND BUT HE FREAKED OUT ABOUT ME BEING ON THE PHONE THE WHOLE TIME. THEN HE TRIED TO GET ME TAKEN OFF THE BUS, BUT THE SUPERVISOR AND SECURITY GUARD LISTENED TO ME AND TOLD HIM TO LET ME STAY ON. NOW HE'S INSIDE TELLING THEM HE WON'T DRIVE WITH ME ON IT. I PROMISED NOT TO TALK ANYMORE AND DELETE THE VIDEO I TOOK, BUT I'VE SINCE RESTORED THE VIDEO AND AM UPLOADING IT TO YOUTUBE. BUS NUMBER IS [redacted].
WHILE I WAS TYPING THIS HE CAME BACK AND WE'RE NOW ON OUR WAY, BUT ANYONE WHO WANTS TO CALL GREYHOUND AND MAKE A REPORT FOR ME MAY DO SO SINCE I SAID I WOULDN'T MAKE ANY CALLS. BUS [redacted] THAT WAS SCHEDULED TO DEPART 6/8/16 FROM BALTIMORE TO PITTSBURGH AT 6:06, ACTUALLY DEPARTING AT 9:15 PM.
#Greyhound #AmericansWithDisabilitiesAct #CivilRights
P.S. I use a walker, with a cane to actually get on and off the bus. Trust me, he knew I'm disabled.

My god, my friends are awesome. Between a bunch of my own friends and then a bunch of people on my MS group on Facebook, Greyhound got enough calls to complain that the Vice President of Customer Relations for all of Greyhound was contacted and wound up seeing the video.

By the time I made it to Pittsburgh, there was a supervisor (Mr. Wade) and a security guard waiting at the terminal… to ensure my safety from the driver. Mr. Wade, who I have decided is one of the sweetest people on the face of the planet and who has the most amazing customer service skills of anyone I’ve ever met, sat with me and helped me calm down. I wrote out a big long report and was given a refund for the trip, along with hugs and support. Seriously, Mr. Wade is the best.

Since then I’ve gotten a lot of support, including a letter of apology from the regional Vice President of Greyhound, and the driver is no longer working with the company.

The moral of this story is: Being disabled does not mean you are a second class citizen. Disability Rights Are A Civil Right. If someone is coming down on you and trying to short change you because they perceive you as being weak because you are disabled… don’t let them! Stand up for yourself and your right to be treated as a human being. Yes, some people will be annoyed at you for taking up some of their precious time, but ignore that. You are worthy of being treated well. You are strong. You are powerful. You can make the world change.

Tired of Being Tired, Sick of Being Sick

There’s a wonderful story well-known by people with chronic illnesses that I encourage everyone to read. In summary, a woman with a chronic illness explains to her friend how much she can do in a day using spoons to represent various tasks and explaining how each day provides only a certain number that can be used. The whole story is definitely worth the read, especially if you’ve got a “spoonie” in your life.

It’s a humbling experience to have your body betray you. No matter how many wonderful ideas you have, no matter the good intentions and positive mental energy that want to come pouring out of you, your body can just shut down and say “NOPE! All you’re going to do today is lie in bed and binge watch Leverage!” It’s hard to not become bitter as you realize how many of your aspirations you’ll never achieve, something which after years of therapy still find having trouble with.

I have a backlog of articles half-written and a longer list of ideas and inspirations that I want to post, but unfortunately my mind and my body are not cooperating with me. Since my last entry I’ve had two MS flares, fallen down a flight of stairs, and had surgery, amongst other things. I’ve had my disability hearing and, because the judge and I were apparently living in parallel universes, was denied, so I’m working on that appeal. (Quick rant: Every single thing written by my regular doctors, some I’ve been seeing for six or more years, she “afforded little weight” to, but she “afforded great weight” to the two social security doctors I’d never even heard of before I sat down to read the judge’s ruling. Grrrrrrr.) In good things, I’ve been doing some awesome work with the Access Mob, I am now a board member for Accessible Dreams, and I’m working to build a new Center for Independent Living in Pittsburgh. My love and I have traveled several of times and otherwise had a fantastic year.

So be patient with me, dear readers. I will start this going again, providing my body cooperates with my fervent desire to do so. Only so many spoons in a day, after all…

I'm On The Front Page!!!

Words cannot begin to express my excitement over being featured in an article in the Pittsburgh Post Gazette today, especially since that article was on the front page of today's paper. My excitement isn't just for me, though. It's the fact that an article about disability activism was featured so prominently in a major newspaper. My eternal love and gratitude go to the brilliant Diana Nelson Jones, whose piece was one of the most positive pieces on disability I've ever read.

AMP - Access Mob Pittsburgh Meet & Greet

AMP, the Access Mob Pittsburgh, cordially invites you to our Meet & Greet on Saturday, April 2, from 11-2 at TRCIL's new headquarters at 901 Pennsylvania Avenue, Pittsburgh PA 15233.

Senator Jay Costa will be attending as a special guest and is looking forward to talking with constituents about accessibility-related issues in the Region.

There will be a sign language interpreter at the event. I also have a limited number of braille documents, so I encourage people with vision impairments to find me and give me your email address so I can email all of the documents I wasn't able to get done in braille. Donations will be gratefully accepted to help offset costs and to provide interpreters and braille documents at future events.

And because we don't come unless we're fed.... THERE WILL BE FOOD!

About AMP, or Access Mob Pittsburgh:

The Americans with Disabilities Act is a complaint-driven law that often requires people with disabilities to sue businesses in order to be granted basic civil rights. This is exhausting, can turn people with disabilities into social pariahs, and does nothing to create a community of involvement.

The goal of the Access Mob Pittsburgh is to bring communities together to advocate through positive measures. These include projects such as:

* Organizing groups to canvass neighbourhoods to do censuses of sidewalks, intersections, and cut curbs in residential areas and business districts.

* Organizing groups to canvass business and retail areas to evaluate the level of accessibility individual businesses according to ADA and ABA standards.

* Ramp Crawls, Shopping Crawls, and related activities to reward businesses who are ADA compliant, to show the collective buying power or people with disabilities, and to demonstrate to a range of businesses that yes, people who are disabled like going out to night clubs and fancy restaurants.

* "Un-Protests" - Approaching businesses that are not accessible and expressing to them that people with disabilities want to spend money there, and that people who are currently fully-abled want to continue patronizing should they become disabled in the future.

For more information, please see the posters attached below. You can find us on the web at:

Meetup: http://www.meetup.com/Access-Mob-Pittsburgh/

Facebook: https://www.facebook.com/groups/1628957307389450/

Google Groups: https://groups.google.com/forum/#!forum/access-mob-pittsburgh

We can't wait to meet you!

In medical school they didn' teach us it was OK to kill people with disabilities

A couple of nights ago I attended a vigil for the Disability Day of Mourning, which honors the memories of people with disabilities murdered by their family members or caregivers, often under the pretense of being "merciful" and "heroic" and "out of love." To say I was moved would be an understatement of the highest order, and I found myself in tears on several occasions.

One of the most memorable speakers was a local medical doctor, who read a poignant piece she had written. I won't steal her thunder, except to quote one small portion of her words, and to encourage you to visit her blog (linked below) to read the rest of her powerful statement:

In medical school
They didn' teach us it was OK to kill people with disabilities

They just rounded on the hospital floors and shook their heads and clicked their tongues, and said "he has no quality of life"
And "she should be DNR"
And "his poor mother"
And we should "ind the circuit breaker" for this room full of babies who breathe with ventilators
And "he best thing for him would be for him to earn his angel wings."

Access Mob Pittsburgh

Introducing my new project... Access Mob Pittsburgh!

Image: The handicap symbol in black inside a gold triangle, with "Access Mob" written on top and "Pittsburgh" underneath.

Access Mob Pittsburgh promotes social advancement through positive change.

The Americans with Disabilities Act is a complaint-driven law that requires individuals with disabilities to sue businesses in order to be granted basic civil rights and gives the public a negative image of people with visible differences. The goals of the Access Mob are to bring communities together to advocate for change through positive measures.

In the spirit of Flash Mobs, this is a space for discussion and organization of Accessibility Mobs. Accessibility Mobs can be (but are not limited to) any one of the following:

* Organizing groups to canvass neighborhoods to do censuses of sidewalks, intersections, and cut curbs in residential areas and business districts.

* Organizing groups to canvass business and retail areas to evaluate the level of accessibility individual businesses according to ADA and ABA standards.

* Ramp Crawls, Shopping Crawls, and related activities to reward businesses who are ADA compliant, to show the collective buying power or people with disabilities, and to demonstrate to a range of businesses that yes, people who are disabled like going out to night clubs and fancy restaurants.

* "Un-Protests" - Approaching businesses that are not accessible and expressing to them that people with disabilities want to spend money there, and that people who are currently fully-abled want to continue patronizing should they become disabled in the future. 



Join our Meetup by clicking here and our Facebook group by clicking here!

I'm Back!

Hello, internet!

I'm back and ready to update my blog after far too long an absence. Apart from the holidays being wonderful and fun and family-filled and not a time to write, my laptop pretty much died on me. But my cousin Rich went all Frankenstein on it, so now I have a somewhat quirky but overall functional computer again. Woohoo!

Thursday Night Lights

Patricia V left a comment on my post about my walker:

I would love to know HOW you add the lights. Where did you get them? Are they battery powered? I want to add lights to my walker but don't know how! Thanks.

Here's a quick video I whipped up on my lights, since it felt like showing was easier and quicker than writing:


As for where I got my lights, I've gotten most of mine from either Amazon or Target. Most Targets have a section in the back year-round with Christmas lights and some of these are cute and battery-operated. Otherwise I've spent many an hour on Amazon looking up "battery string lights" and similar searches, and I have a range of things for various times of year. These are the lights I have on the lower bar year-round so I can be visible while crossing streets at nights. These are what I had on for the spring and early summer. These are what I have on now.

One recommendation I would give is to get a ziplock baggie and put the battery pack in there - I've had the wonderful experience of a set of lights getting rained on and the whole thing shorting out and melting.

I hope you found this helpful! I'd love to see photos of what you do with your walker!

Access Mob Pittsburgh's First AXS Map Mapathon!

Come join us on Access Mob Pittsburgh's first ever AXS Map mapathon!

The purpose of the mapathon is to generate data for AXS Map, a valuable tool for people with physical limitations to determine whether or not they can patronize certain businesses. Currently there are only a limited number of restaurants, retail stores, academic and cultural institutions, and other places of business that have been rated within the City of Pittsburgh and its surrounding areas.

We will be starting at 10 AM on Saturday, October 24, in the center vaulted section of the Cathedral of Learning's main floor - look for the sign! From there groups will be assigned to different neighbourhoods to begin mapping.

Before coming, all attendees should watch the videos on the AXS Map website that instruct people on how to perform ratings.

Mappers are encouraged to dress in layers and wear comfortable shoes. If possible, teams should include at least one driver; some neighbourhood areas will be reserved for people going by bus or by foot.

When finished with their respective neighbourhoods, teams are encouraged to go out on their own to find new places to rate, and when everyone is done for the day participants are encouraged to go and spend money at one of the places they've given a high rating to, as a thanks to those businesses.

People of all ages and levels of ability are invited! However, we do require that anyone under the age of 17 be accompanied by a legal guardian.

To join the Access Mob on Facebook, click here.

To invite your friends via the Facebook event, click here.

Alisa and the Wonderful, Fabulous, So Good, Very Rad Day

I had the best concert experience a couple of months ago.

If it hasn’t become abundantly clear yet, I love Dave Matthews Band, and this year I had the wonderful opportunity to travel to Raleigh and stay with my best friend from grad school and her family the week DMB was playing at Walnut Creek. And this concert was nothing short of magical.

I should mention first that people in the South are just plain nice. Everyone smiles and is courteous and makes sure you’re having a great day, and as a native Manhattanite used to a general air of menacing disinterest from passers-by this is a truly amazing experience. I often feel very awkward when I have my walker and people go out of their way to hold the door for me because it reminds me of yet another way I can’t function the way I used to, but in the South they do it because it’s what they do for everyone. Because it’s a nice thing to do. Seriously. They’re that nice.

I don’t know if it’s because it’s in the South where people are nice or if some awesome person cared enough to do something, but Walnut Creek Amphitheatre has an amazing setup for people with accessibility needs. At the main entrance there was a golf cart ready to drive people down to the seating area rather than making us walk. A lovely lady passing by even stopped to help load on my walker because, as she told me, her nan uses a walker and she hopes that people offer to help her out like that. The ADA section was set perfectly at the ledge over a walkway that went a good 5’ below so that everyone could see the stage at all times without standing up. I made concert friends with the woman next to me (who also uses a walker – yay, having someone my age to talk to about walker issues!) and her husband, as well as the pleasantly amusingly drunk woman to my left. Then the concert began.

At the beginning of the second set my seatmates encouraged me to leave my muticoloured flower lights (which I had used to plow through the crowds so I could get to the bathroom in one piece) on for the rest of the show. Despite feeling rather self-conscious, I let them shine for all to see. And apparently they were visible, as toward the end of the main concert a gentleman waved from the walkway below to get my attention, then handed me a piece of paper.

It was the set list.

For those of you who don’t understand how absolutely amazing this is… They probably print two copies of the thing, and after concert fans will fight tooth and nail to get to the roadies who are cleaning up and see if they can get one of the lists. But here I was, being handed what in many fans’ eyes would be considered the Holy Grail.

I would like to say that I handled myself with utmost decorum. I would love to say that I politely thanked the man, tucked it away, and spent the rest of the show quietly enjoying myself. But then I’d not just be telling a slight mistruth, I’d be lying out my ass. After a moment of dumbfounded shock, I started screaming “HOLY SHIT! IT’S THE SET LIST! I GOT THE SET LIST!” At high volume. Repeatedly.

After a moment I motioned to the bemused man to come up so I could give him the biggest hug. After he’d regained all of the breath I’d squeezed out of him, he told me that he was Boyd Tinsley’s vocal coach, and he’d wanted me to have the set list because he’d seen me rocking out from all the way up there on the stage. I bounced around uncontrollably for a moment out of excitement because I am a tremendous fan of Boyd Tinsley (to the point of trying to always have seats on his side of the stage so I can watch him play). After the giddy bouncing subsided I asked the lovely gentleman for a favour and told him my sad, sad story of woe from last summer.

*cue magical mystical music that always implies a flashback in cheesy sitcoms*

Last summer my then-roommate and I had front-row tickets to see DMB when they came to Pittsburgh. That’s right, front row, directly behind the pit, less than 30 feet away from where Boyd always stands. It was amazing. At the end when Carter was throwing out drumsticks I started waving my cane so he’d see me and throw me a stick. Which he did, or at least he tried. He pointed at me, then tossed a drumstick which I would have caught had I not been knocked to the ground by two college-aged girls from the seats behind us in their attempt to get the sticks. While they gloated about how they’d been able to catch drumsticks two nights in a row, I was being helped up by a couple of guys who’d actually jumped over the barrier from the pit to help me out. And as if that wasn’t bad enough, I got banged up badly enough from their slamming into me that at the end of the night I had to be pushed out of the venue in a wheelchair. Since then I’d been trying unsuccessfully to get a stick thrown my way again so I could at least get a fighting chance at snagging one without worrying about breaking a bone…

I told Boyd’s coach all this, and asked if he could have Carter throw one my way. I didn’t need to catch it, I just wanted the opportunity to try. He laughed and said he couldn’t make any promises, but he would try his best.

For the rest of the concert I sat quietly and enjoyed myself bounced around in my chair and checked on my set list just to make sure it was real, smugly superior in the knowledge of what the encore was going to be, a fact no one else in the entire 20,000+ person audience knew. And at the very end of the encore, Carter did his thing, waving at fans, shaking hands, tossing out drumsticks to those who were fairly close to the stage.

Then he pointed at me, and made a motion that as a rabid football fan I easily interpreted to mean “Go long!”

And he hurled it.

Time stood still as this yellow drumstick, this golden prize, came flying at me, arcing high over the crowd. There was nobody behind me to knock me down! Everybody knew it was heading for me! MY TIME HAD FINALLY COME! Flying, flying, flying…

And it missed me and fell three feet short of my arm’s reach into the walkway below.

Have I mentioned yet how gosh darn nice people are in the South? Had this happened here, someone would have grabbed that stick and run. But not so in Raleigh! A man who’d seen the whole thing and knew that drumstick was intended for me ran over, grabbed it, and… handed it up to me.

I feel like I just wrote the script to some sappy feel-good movie, because life never has a happy ending like that, but I guess that’s the South for you. In any case, after bouncing and screaming and acting like a caffeinated two-year-old, I very carefully cradled that drumstick in my hands from Raleigh to DC to Pittsburgh. The drumstick, set list, and Warehouse ticket (Holy trinity?) are now in a picture box on my living room wall, and I could not be happier.

So thank you, Walnut Creek Amphitheatre, for being welcoming to those with disabilities. Thank you, Boyd Tinsley’s vocal coach, for making a dream come true. And thank you, The South, for being pretty darn awesome.

My awesome picture box frame.

My little DMB corner of my house. I'm not addicted. I swear. Shut up. I can quit any time I want.