View of a grey Derwent River, with cloudy skies. Bruny Island is in the distance.

To Tell the Truth

I’ve been sitting on this post for a few months, writing when I felt the urge. It seems fitting to share this today, which I just learned is the International Day of Happiness, because I am the least happy I have ever felt in my life and I don’t know what to do about it. Admitting that is difficult, because I know my friends and family will want to help me, make things better, do something to make me happy. The reasons for my unhappiness are complex and there are no easy fixes. Trust me, if there were, I would have done them by now.

This has been building since I lost more physical independence after my femur fracture in 2016. That catastrophic event took away my ability to independently drive my van, and increased the number of personal care hours I require. It also caused me to change how I use the bathroom, limiting my ability to pee freely as I described in this post. OK – to be fair, I’ve never been able to pee freely. But, until I broke my leg I was not limited to the use of three bathrooms on the planet.

The loss of independent transportation required me to move – twice – in the past eighteen months. I have been using my local paratransit system for most of my travel to and from work and events. Paratransit is a shared ride system, which means you are not guaranteed a direct ride from your pick up location to your destination. There have been days that I am picked up at my house (which is 15.9 miles from my office) to ride around for two hours, picking up and dropping off other passengers until I am dropped off at work. On average, I spend two and a half hours every day on the bus to travel my 32 mile round-trip commute. This is time I don’t get to write, volunteer, read, work, or just relax.

Last September, my friend and former college roommate Chris surprised me with a phone call. We hadn’t spoken since the start of summer, but our friendship is one where we can pick up exactly where we left off even if it has been months since the last conversation. We we played catch up and traded stories, I admitted that the past several months had been stressful. My exact words were something like, “I’m not really doing well and feel like I’m barely keeping it together most days.”

Chris was quiet for a moment, then responded, “Well, I wouldn’t have known that from your Facebook posts! You’re so busy, and always writing about volunteering with Rotary.”

The truth? I hate being negative all the time. So I don’t share all the crap I’m dealing with on social media.

I am not alone in this. According to a survey conducted in Great Britain, only 1 in 5 people are truthful in how they portray themselves on social media sites like Facebook and Twitter. According to the marketing company Custard, who performed the survey:

When asked how people’s lives differ online, 31% of respondent said that their social page is “pretty accurate, just with all the boring bits removed” and 14% said that their profile makes it look like they have a “much more active social life.” The survey also showed that men are more likely to lie about their lives through social networking sites, with nearly half (43%) of men polled admitting to fabricating facts.

I don’t feel like I’m lying on social media. I am not making up the things I share publicly. In my case, I choose to try to keep complaints to a minimum on Facebook. I am consciously not sharing most of the daily stress that is causing me to slip further into a pit of unhappiness. At least, I try my best to keep the negativity to a minimum.

But I’m struggling. Right now, finding positivity is a chore I force myself to complete each day.

It used to be my natural way of operating. I am an optimist. I see the glass half full. I believe things could always be worse. Yet, recently I don’t feel up to the challenge of maintaining optimism.

I have withdrawn from friends and family who care. I text instead of calling because it requires less energy. Until last week, I hadn’t sent a birthday card to anyone in at least two years. At a time when I should be surrounding myself with other positive people because I’m an extrovert who gets energized in social situations, I am hibernating.

I am not writing as often and when I do it’s not my best work. Writing helps me process what is happening in my world. It is a way for me to maintain balance and emotional stamina. A glance at my blog statistics shows I only posted 55 times in 2017. That may seem like a good number. But when you compare it to 2015, the year before the femur fracture, it pales to the 164 posts I shared.

Before any of you start sending me notes reminding me that you love me and that life is not all bad, I need to tell you something. I KNOW this is temporary. I KNOW what is happening in my life is not the worst thing in the world that could happen. I KNOW there will (eventually) come a day when my new wheelchair doesn’t make me cry in pain. I KNOW I will (someday) get that new wheelchair accessible van with the high tech driving controls which will enable me to participate in my community at will. I KNOW there are millions of disabled people who would love to have the difficulties I am facing right now – people who don’t have accessible housing, access to paratransit, full-time employment, adequate personal care assistance. I KNOW I am speaking from a world of privilege they do not have and would gladly take in a heartbeat.

Knowing those things does not make the challenges I’m facing less real or less of a barrier in my life.

Last week I attended a book reading at my local independent living center. During the community discussion after the reading, someone mentioned the anger disabled people feel – anger that is not acknowledged or validated. Often, well-meaning people will listen to me vent in frustrated anger and respond by saying, “Well, at least it’s not this (insert awful thing here)” or “It could be worse! You could have (insert other disability or illness here).”

Those comments don’t help me feel less angry. They don’t acknowledge that here and now, I am living with levels of fear, anger, and unhappiness which threaten to burst out at inappropriate times. They don’t validate my feelings of discouragement at having to battle and navigate a bureaucratic system which is supposed to be helping me but has not produced anything meaningfully helpful in 18 months (I’m talking about you ACCES-VR).

So, today, on this International Day of Happiness, even a gratitude list doesn’t make me feel happy. I debated whether or not to share this post and eventually decided perhaps there was someone else who is not happy today who could benefit from knowing she is not alone. I edited, deleting swear words and prepared myself for the reaction it will bring.

Tomorrow I’ll be better. That’s the way it’s been for over 2 years. This too shall pass. Periods of happiness can be found, just not for me today.

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30 Days of Thanks Day 16: Backup Personal Assistants

It is 9:37 PM right now as I sit writing this post on my phone. I am in the foyer of a local banquet hall, waiting for my paratransit bus. I requested a 9 PM pick up and it was scheduled for 9:25.

Here’s the thing with paratransit. I can only be 5 minutes late. But they can be up to 25 minutes late and still be considered “on time.”

At 8:27 PM, as I was eating dessert at the event, my Personal Assistant sent me a text asking if I could find someone to cover her 10 PM shift. She isn’t feeling well.

Thankfully, one of my other Personal Assistants lives just five minutes from my house and is willing to meet me when I get home so I can pee and go to bed.

The bus just pulled up at 9:43 and with any luck I’ll be home by 10:20. I can hear my bed calling me.

Tonight I am grateful for backup Personal Assistants who come in on short notice so I can pee and go to bed.

30 Days of Thanks Day 14: My Peers

I spent today at a meeting of the New York State Independent Living Council (NYSILC). This council is a non-governmental nonprofit comprised of 25 appointees from around the state. As a council, we are responsible for developing, monitoring, and evaluating the Statewide Plan for Independent Living. We also conduct surveys and develop reports about issues impacting New Yorkers with disabilities. You can learn more by watching this video:

After the meeting, my friend Blaise and I spoke about disability and independent living to a class of local community college students. We have done this once a semester for almost three years now. Tonight’s students were engaged and asked GREAT questions about disability policy, etiquette, personal assistance and language.

Today I am grateful for the relationships I have with my peers. I am fortunate to have this strong network of other disabled advocates. I learn from them every day, and grow through our interactions. When I have questions, they are quick to offer answers and insights. If I am struggling, they offer suggestions and advice.

 

The words 'Disability Rights are Civil Rights" appear in red, white and blue lettering on a black background.

What the ADA Means to Me

When I was a participant in the 2002 Ms. Wheelchair America Pageant, I was selected as one of the five finalists. As a finalist, I had to answer two extemporaneous questions on stage during the crowning ceremony for the final judging session – a serious question and a light-hearted question. Like most of my peers, I chose to answer the serious question first.

In one single sentence, explain what the American with Disabilities Act (ADA) means to you.

I don’t remember my exact answer. I do remember thinking, “One sentence?! Do they know me?! How am I supposed to answer this in one sentence?!” I could hear my sister Sandy laughing in the audience, and knew she was probably thinking the same thing.

I said something about the ADA being crucial civil rights legislation which gives protection and access to millions of Americans with disabilities. I kept it to one single sentence as requested, at least I think I did.

Today is the 27th anniversary of the signing of the ADA. As I write a draft of this post while riding the paratransit bus to work, I am thinking of the many ways this civil rights law has changed my life and the lives of those around me.

This bus, every public bus that is accessible – all thanks to the ADA and the ADAPT activists who literally put their bodies on the street to force change.

I am going to work today, along with my good friend Bill who happens to be on the same bus this morning. Bill acquired his disability just a few years ago, but thanks to the ADA has been able to remain employed with reasonable accommodations from his employer.

I got out of bed this morning, went to the bathroom, took a shower, got dressed and styled my hair with the help of the Personal Assistant who came to work for me today. My personal care needs can be met in the community rather than an institution because of the ADA (and because I live in a state like New York which offers a Medicaid Buy-In Program for Working People with Disabilities.)

Think the ADA only helps those with disabilities? There are many examples of how ADA regulations have helped more than the disabled population, but here is one that is prevalent. Have you ever pushed a baby stroller down the street and used the curb cut to gain access to the crosswalk? What legislation do you think required those curb cuts? On behalf of all disabled people who fought for access, you’re welcome.

The ADA is about more than just physical access though. For me, the ADA creates a sense of entitlement because it tells me I am worthy of equality. Because of the ADA, it is illegal to discriminate against me and other disabled people. I have expectations of access now that I did not have twenty five years ago. When I travel in the United States, I expect to find curb cuts, accessible toilets, wider doors in hotel rooms, accessible public transportation, and accessible parking.

Does that mean I always find these things? Of course not. But thanks to the ADA, I have the ability to pursue legal action if I feel I am being discriminated against because of my disability.

Equality – that’s what the ADA is all about to me. It is not a guarantee I will succeed, but it is an important guarantee that at least I will be afforded the same opportunity for success as my nondisabled peers.

Of course that is not the way it really works. For many reasons, disabled people still face significant barriers to education, employment, housing and transportation. And of course, like the rest of the United States, we are waiting to see what our legislators will do to healthcare and Medicaid. For many, today is not a day of celebration, but a day of anxiety and fear.

That may sound extreme for those of you who do not rely on Medicaid for your daily needs. I have had friends tell me, “Oh, don’t worry. They won’t take away your personal care.”

Here’s the thing – we don’t know what will happen. And it is far too easy for someone who is able to get out of bed, pee, poop, shower, eat and live without the assistance of another person to dismiss our concerns.

My needs are not “special.” They are the same basic needs every human has. I have the right to expect that I can meet my needs in my community, just like everyone else. The ADA guarantees me that right, and when you need that level of assistance (if you live long enough, you will!) hopefully you will have that right too.

Freedom. Life. Liberty. The pursuit of my career, hobbies and other things that bring me happiness.

That’s what the ADA means to me.

Wheelchair access symbol: white line drawing of a figure wheeling himself in a wheelchair on a blue background.

Things People Say and Do

Every so often, I’ll see a post with the title of “Things Not To Say to a Wheelchair User,” or something like that. I’ve even written a post along those lines. You can read it here if you missed it.

I don’t know why, but lately I have been on the receiving end of many comments I am sick and tired of hearing. When I share stories of these interactions with friends, they often express disbelief and wonder that I regularly have these interactions. But, apparently there are people who haven’t read the memo. This list of 5 pet peeves of mine is for all of those who STILL aren’t clear about what to say or do around wheelchair users.

1. NO SPEEDING JOKES!

We get it. Our chairs are cool, and they go fast. You might see us go whizzing by and think you’ll try to make a clever joke about us breaking a speed limit. DON’T make whatever comment you are about to make. Just don’t. It’s not original. It’s not funny. I spent the first 29 years of my life being the slow one. You bet your ass I’m going to speed and go fast now that I have the ability to do so!

2. We’re not going to run you over!

How many times have you walked down a hallway and encountered a wheelchair user approaching you from the opposite direction? Do you just keep walking or do you flatten yourself against the wall in fear the wheelchair user will run you over? When I used to work in an office building, this would happen to me at least once a week. I would be rolling down the hall towards my office, see a person walking towards me and get ready to smile. I stopped counting how many people literally stopped walking and put their back against the wall after it happened for the tenth time. It wasn’t a narrow hallway. At least four people could walk comfortably side by side down this hallway. Yet, strangers would cower in fear whenever I approached. One man even jumped into the stairway to avoid me – while I was still 20 feet away! He stood there until I went by before coming back into the hallway and resuming his walk to the cafeteria.

Here’s the thing – I have control over my chair. When I am going from place to place, I am constantly aware of what is around me and make minor adjustments to my pace and direction accordingly. Just like most people who walk, I am usually able to avoid potential barriers that might be in my intended path. I am not going to run you over unless you come to a sudden and unexpected stop directly in front of me without warning. Or unless you try to make a stupid speeding joke. If you do that, you deserve to have your toes run over. Twice.

3. I don’t care about your relative or friend who also uses a wheelchair, and

4. I don’t dream about a wheelchair that can climb stairs.

Sometimes, people will try to build a connection by telling me right away about someone else they know who also uses a wheelchair. Usually, the conversation goes like this:

Stranger: Hey, nice wheels. My neighbor just got a new chair like that.

Me: Thanks.

Stranger: Her chair can tilt and recline so she can take a nap in it. Does yours do that?

Me: No.

Stranger: Yeah, it’s amazing what wheelchairs can do. Have you seen that YouTube video of the chair with treads climbing stairs? I bet you want one of those!

Me: No, I’m good with mine thanks. (End Scene)

I’m not impressed by the fact that a person knows another wheelchair user. In fact, I’m more surprised when people tell me they don’t know a disabled person. Since approximately 20% of the population lives with a disability, chances are good that everyone knows at least one disabled person. So, telling me you know another wheelchair user as a means to form a connection really doesn’t help me feel more inclined to open up.

As for wheelchairs that can climb stairs – well, if we simply built or modified our environments so people of all abilities could participate in equality, we wouldn’t need to waste money on resources to eliminate barriers. I don’t need a wheelchair that can climb stairs. I just need architects and planners to consider that not everyone has the ability to climb stairs, and then develop inclusive plans and designs. I am more disabled by a society that does not consider and plan for my access needs than I am because I have a wheelchair that doesn’t climb stairs.

5. Just because we’re disabled doesn’t mean we know all the other disabled people!

Let’s go back to the scenario of a stranger telling me they know another wheelchair user. At least 50% of the time, once the stranger tells me they know another wheelchair user they then ask me if I know that person. Here’s the thing – I don’t know every other wheelchair user! Sure, I know LOTS of people. I have a large circle of support and am connected to others in the disability community. But, despite what my friends and coworkers may tell you, I don’t know everyone.

I could easily continue with this list, and maybe some of my readers will share there own experiences in the comments. For now, I’ll close with this advice.

Everyone wants and deserves to be treated with respect. While I do my best to assume good intent in the actions and words of others, the little digs add up over time and become tiresome. Next time you are uncertain of what to say or do, try a simple smile and “hello.” That always seems to work for me.