I Am Not Inspired by Morgan Inspiration Island

Have you read about the new water park in Texas designed for children with disabilities?  It's called Morgan Inspiration Island, I guess because people with disabilities are supposed to inspire non-disabled people, you know.

While everyone is all excited about an accessible, inclusive water park, remember that this means other water parks are inaccessible, exclusive. And this one is sort of exclusive too since it's being advertised as being for kids with disabilities, instead of for all kids. Apparently kids with disabilities need their very own water park, instead of being able to enjoy whatever water park is near their home.

Would the response be the same if a new water park was opened for African American kids? Or for Jewish kids? Or for any other group? Why segregate the kids with disabilities in their very own water park instead of demanding all parks be accessible - you know, like the federal law says they should be anyway?

Being Disabled is Expensive

I first discovered this when I was 18 and still in high school.  I got a job as a live-in home health aide for a man that was quadriplegic, paralyzed from the neck down.

He'd fallen off a railing around a deck when he was 18 and just out of high school, just getting ready to enter the army.  The deck wasn't high, it wasn't a far fall, but he landed in such a way as to break his neck.  Instead of entering the service, he entered intensive care and then a rehab center, where he learned to live with paralysis.

When I met him, he was in his early 40's, divorced with two children, a teenage son that lived with him and a  younger daughter that lived with his ex-wife.  He had a nice home and good job as a computer programmer for the city.

I earned something like $4.80 per hour and worked about 30 hours a week, bathing him, feeding him, doing light housekeeping and meal preparation, taking him grocery shopping on the weekends and picking him up after work (someone else drove him to work on days I was in school).  I got up at 4:30 AM to bathe and dress him and feed him breakfast before showing and getting ready for school, then driving almost an hour to the vocational school I attended.  In addition to my hourly wage, I got room and board.

The state paid most of my wages, out of some program designed to keep severely disabled people out of nursing homes and off Medicaid and welfare.  He paid the rest, as well as paying for my room and board.  I was surprised to find out that although he had a good job and good health insurance (provided through his job), he had to pay out of pocket for a lot of his medical supplies, like catheters and dressings.  He also had to buy a wheelchair accessible van and a home that was wheelchair accessible.  I remember thinking then how expensive it was for him to afford his disability (not that he had a choice about it) and that he was lucky he had such a good job.  I remember wondering what happened to people that couldn't afford their disabilities.

Well, I am not in my 40's and I have learned that most people with serious disabilities don't have good jobs and can't afford nice homes.  I knew the man I worked for was lucky even back then, even when I was just 18 and still in high school, but I know it even more now.  And I know what happens to people that can't afford their disabilities. 

According to one source I found, Americans spend an average of 17.6% of their income on health care.  That's a lot, I think.  Some sources say it's less, more like 11%.  I had trouble figuring out which number might be most accurate.

But this year I think I spent a little over 25% of my income on health care, much of that related to my disability.   And my income is low.  I am above the poverty level, about 200% of the federal poverty level, in fact, by income, but geez.  Have you looked at the poverty level guidelines?  They are low.

Service dogs are expensive.  Isaac is a big part of my health care expenditure.  But he's not the only cost, not at all.  I don't understand how our country expects people with low incomes to pay so much out of pocket for health care.  It shouldn't be this expensive to be disabled.

Discrimination Is Not Helpful

Quite a few people have suggested to me that the first church I called, the one that said I could bring Isaac but we would have to sit in a special reserved seat, was not trying to discriminate or make me uncomfortable but was trying to be helpful.  Well, I don't know what their intentions were.  You would assume a church would want to be helpful and welcoming, but then, many churches refuse to allow people with service dogs to attend at all, so those churches do not intend to be helpful or welcoming.  So that is not the intention of all churches.

But maybe it was the intention of this church.  I don't know.  I didn't ask them.

The bottom line is, no matter what their intentions, discrimination is not helpful.  Discrimination is not welcoming.

And yes, segregating a person because they have a disability, insisting they must sit in a special reserved seat when everyone else gets to choose any seat they like, is discrimination.  Offering to reserve a seat or asking if I would need a special seat, that would be offering to be helpful.  But insisting I sit in a special seat when I do not need or want a special seat?  That is discrimination.

The U.S. Department of Justice even says it is discrimination.  Under the Americans with Disabilities Act, it is illegal for a business to do that.  But of course, churches are exempt from the ADA, so they are allowed to discriminate.  The fact that it is legal doesn't make it helpful, though.

The thing that surprised me is that many of the people suggesting the church just wanted to be helpful and that I was being unreasonable have disabilities.  I've written before about how bigotry can be internalized and this is yet another example.  I am unreasonable for objecting to discrimination.  The people discriminating against me are not unreasonable.  I should appreciate them just allowing me to attend their church and not expect to receive equal treatment. 

Well, no.  I don't appreciate discrimination and I don't find it helpful.  Not at all.

What Disabilities Qualify for a Service Dog?

I get questions a lot like can you get a service dog for depression?  For generalized anxiety disorder?  For Tourette Syndrome?  For asthma?  Insert your disability here.

When determining whether or not you qualify for a service dog, it doesn't matter what your disability is.  What matters is how your disability affects you.  It's a matter of how severe your condition is, not what your diagnosis is.

A real simple example is that of visual impairments.  Many people wear eyeglasses.  But most are not disabled by a visual impairment.  With their glasses, they can see all right.  Some people, though, have such poor eyesight that glass don't help or that, even with glasses, they cannot see very well at all.  They have trouble doing all sorts of things due to their poor eyesight.  They are blind or visually impaired and are considered disabled.

The same can be said for many, many conditions.  Lots of people with PTSD are not disabled by the condition.  Many people have anxiety disorders, and maybe they see a therapist or take medication for it, but they aren't disabled.  They are able to do daily tasks with little or no assistance.  Some people, though, are unable to manage basic tasks due to their severe anxiety and they are disabled by the condition. 

Lots of people have diabetes but are not disabled by it.  They have to watch what they eat and maybe they need to check their blood sugar a few times a day and maybe they take medication or even insulin injections, but they are able to see and hear and think and communicate and concentrate and breathe and all those basic life activities just fine.  Some people, though, have severe highs and lows with their blood sugar and for some reason aren't able to feel it when their glucose drops dangerously low (I sure feel it, but some people, often children, don't), and it can be life-threatening.  They might be disabled by their condition, even though many people with diabetes are not.

I could make a list of disabilities for which someone might have a service dog, but it would be a super long list, and I'd be sure to forget to include some conditions.  The bottom line is that it depends on how the condition affects you.  If you're not sure if you are disabled by your condition, whatever, that condition is, that is a conversation to have with your doctor.

And if you're not sure how to go about talking to your health care provider about a service dog, check out this post.

Accessibility at State Parks

I've wanted to write about this ever since my camping trip back in June. 

Since I've been paying more attention to accessibility, I notice more and more how inaccessible many places are.  And Isaac and I have spent a lot of time at state parks this summer and I am disappointed, though not really surprised, at how inaccessible many of them are.

It really hit home for me on our camping trip.  There was this trail that was marked with a sign announcing how the first 3/4 of a mile or something like that was accessible.  Keep in mind that "accessible" is usually shorthand for "wheelchair accessible" or "accessible for people that have trouble walking." 

So the first 3/4 mile of this trail was paved and wide and flat.  That's great. 

Many of the trails at this state park were not very accessible and it would be impossible to make them all accessible, because it was a very hilly area.  Many of the trails were very steep and narrow and windy and would be hard to pave and even if you did pave them, they were much too steep for a wheelchair and it would have been impossible to make many of them flat enough.  I get that.  I do.  But why not make as many trails as possible accessible? 

And then there is this.

The accessible part of this particular trail led to a wide sandy area under a huge rocky ledge, almost like a shallow cave.  It was really cool.  And just around a little bend, on the other side of this ledge, was the coolest part.  A waterfall. 

The paved part of the trail ended at the sandy area.  And there is no way a wheelchair could make it through that sandy part (unless it was one of those special chairs designed for use on the beach or something).  From the end of the paved part of the trail, you could hear the waterfall.  But you couldn't see it.

Seriously?  They couldn't extend the paved part of the trail a little bit longer, so that someone using a wheelchair could see the falls?

I can tell you why they didn't.  They didn't because the trail was designed by able-bodied people, without input from anyone that actually uses a wheelchair, without much thought given to what accessibility really means.  The accessible part of the trail was an afterthought, done more so they could say "We have some accessible trails," not so much to actually provide access to people with disabilities.

Oh, that's not the reason they'd give if you asked.  Hmm, maybe I should contact the park service and ask them and see what they'd say.  But it would be something like "We only had so much funding for accessible trails" or "It would have been too difficult to pave the sandy area" or "We didn't want to mar the natural beauty of the area" or even "We didn't realize you couldn't see the falls from the end of the paved part of the trail, sorry."  But what all those excuses really mean is "We didn't think it was that important and we didn't even bother to see what it would actually be like to use the trail with a wheelchair."

And that got me thinking.

The bathrooms nearest our campsite where not accessible.  No way someone in a wheelchair could have used one of those toilets.  Teeny tiny toilet stalls and no grab bars.  And there was no sign telling anyone where the nearest accessible bathroom was, either.

The nearest accessible bathroom was the shower house, about twice as far from our campsite.  Only it was only sort of accessible.  There was an accessible toilet stall inside, but there was a super heavy door that opened out to get into the building and there was not one of those door opener buttons.  It is unlikely someone using a wheelchair could have opened that door and gotten inside the building without help.  Which kind of cancels out the accessible toilet stall, you know?

Want to know why it was designed that way?  Why they didn't bother to make the shower house really accessible and why the other bathroom wasn't accessible at all and why they didn't bother to put a sign on the other bathroom to let people know where they had to go for an accessible toilet?  Well, I'll tell you.

They figure people with disabilities don't really go camping anyway.  They figure people that use wheelchairs can't camp.  So why would you need accessible bathrooms at a campground?  And if by some small chance a disabled person using a wheelchair does go camping, surely they will be accompanied by an able-bodied caregiver.  Maybe not a paid caregiver, but a parent or other relative or maybe a friend, someone that can open the door to the shower house for them.  They figure those things don't really need to be accessible, anyway.

They might not tell you that, either, if you asked.  But that's the real reason.

Why I Am Not in Favor of Certification for Service Dogs

There is a lot of debate in the service dog community about whether or not there should be some sort of certification for service dogs.  For a long time, I thought it would be a good idea.  I mean, there should be some standards, right?  Service dogs should have to be trained properly.

And I still think it is important for there to be some standards and for service dogs to be trained well.  I just don't think certification is a good idea.  And here is why I think that.

Any type of certification system would create barriers for people with disabilities.

Let's say the system required you to have a form signed by your doctor saying you needed a service dog and then you and your dog had to pass a public access test, in which you demonstrated that your dog could behave appropriately in public.  Now, anyone with a service dog should be disabled and ideally would have their doctor on board with the idea of a service dog.  So they shouldn't have trouble getting such a form signed.  And if someone cannot pass a public access test with their dog, they probably shouldn't be taking their dog out in public.

So how would that be a problem?

It would cost something.  Who is going to pay for it?  Probably the person with a disability would be required to pay a fee in order to take the public access test and get a license for their service dog, kind of like when you get a driver's license.  You have to pay to take the test.  You have to pay to renew your license every so many years.

But getting a driver's license is optional.  If you can't afford to take the test, you don't have to get a license.  Having a disability and needing a service dog isn't optional.  You could argue that the disability part is not optional but that the service dog part is optional.  But service dogs are already expensive enough.  I am not in favor of creating additional costs.  And people with disabilities often live on very limited incomes.  Even a small fee could be a significant barrier.

What if it was free to register your service dog?  If it was free to take the test?  Well, I'm skeptical that it would be, because that means tax payers would have to cover that cost, probably by raising taxes, and tax payers are generally not in favor of paying for things for people with disabilities and low incomes, which is why Medicaid doesn't pay for service dogs in the first place.  But what if it was free?

Then there is the question of accessibility.  Where would the public access test be administered?  Getting places is a real challenge for many people with disabilities.  I am fortunate that I am able to drive and have my own car, but many people with disabilities do not.

Those that are able to use public transportation and have access to public transportation rely on that.  But not everyone lives in areas with buses, trains or subways.  I don't.  And some people are unable to use public transportation due to their disability.  For instance, not all buses, trains, train stations, subways and subway stops are wheelchair accessible.  But even when they are, or are supposed to be, there can be problems.

Talk to someone that relies on public buses or subways for transportation and uses a wheelchair.  You'll hear stories about buses with wheelchair lifts that don't work, bus drivers that say they don't know how to deploy the wheelchair lift, and bus drivers that just flat out refuse to allow someone in a wheelchair to board.  Yeah, seriously, that happens.  You'll hear stories about getting off the subway at a stop that is supposed to be wheelchair accessible, then finding the elevator is out of order and there is no way to get out of the underground subway station except to wait for the next train and take it to the next accessible stop.  Yeah, that happens, too.

So imagine you have this test you have to take with your service dog and you get to the bus stop in plenty of time to take the bus to the test site, but the driver tells you the wheelchair lift is broken.  Or simply refuses to let you board, telling you to wait for the next bus because he's in a hurry.  But if you wait for the next bus, you'll be late for the test and have to reschedule.

And what about people with disabilities that can't use public transportation?  Either it doesn't exist in their area, or the public transportation in their areas is not wheelchair accessible, or their disability in some way prevents them from using public transportation.  In large cities, there is usually some sort of transportation for people that can't use regular public transportation, often referred to as para-transit.  The service has to be booked in advance and provides wheelchair accessible rides for a fee.

Supposing the fee is not a problem for a person with a disability living on a very small income, the reliability of these services is often an issue.  I am frequently reminded of how lucky I am not to have to rely on such a service when my friends that do talk about how they were an hour late for a doctor's appointment because their ride was late and then the doctor was unable to see them and they had to reschedule and then they had to wait several hours for their ride back home.  They talk about having to be picked up at 8:00 am for a noon appointment and not being able to get a ride home until 4:00 pm, and then that ride being two hours late, so it takes 10 hours to go to a doctor's appointment.  They talk about how their ride home was several hours late and their doctor's office was closing so they had to sit outside in the dark or the rain, hoping their ride really would eventually show up.  What if you had to rely on that service to get to the test site?

Of course, there is no para-transit service in some areas.  There is none where I live.  The only type of transportation service available to me is through the Medicaid office, and it only provides transportation to medical appointments that are covered by Medicaid.  So if you lived in my area and didn't drive or have a friend to take you, I have no clue how you'd get to the test site at all.

And all this talk about transportation is assuming there would be test sites in every county or every city or something, so that there would be a test site close to everyone that needed to take the test.  But I kind of doubt it would work that way.  In small towns or rural counties, there probably would not be enough people needing to take the test with their dog to make it feasible or cost-effective to have a test site there.  Maybe they would only be in big cities.  But para-transit services are often limited to one city or one county and buses and subways are often limited to a similar area.  So even people with access to para-transit services or public transportation may not be able to get where they needed to go.

In a nutshell,  cost and accessibility would create real barriers for people with disabilities that need service dogs.  And people with disabilities typically deal with enough barriers in day-to-day life already.  I am opposed to creating new barriers.

You Don't Look Disabled

Someone recently remarked in a Facebook group for people with service dogs that she likes it when people tell her she doesn't look disabled.  They will ask her if she is training her service dog, and when she says no, he is her service dog, they seem surprised and say that she doesn't look disabled.  I have the same experience of people asking if I am training Isaac and sometimes they tell me I don't look disabled, but I don't like it.

She said it makes her feel good because she doesn't want to look disabled.

It's not that I want to look disabled, exactly.  What does "disabled" look like, anyway?  But I am disabled.  I want to look like me.  I want to look like myself.  I want to look like who I am.

But beyond that.  What's wrong with looking disabled?  I think people don't want to "look disabled," whatever that means, because they think looking disabled as well as being disabled are "bad" things.  People sometimes say "you don't look disabled" like it's a compliment, not only because they think "looking disabled" would be a bad thing and therefore an insult, they think being disabled is a bad thing.

But I don't think it's a bad thing to be disabled.  Sometimes it's a hard thing.  A challenging thing.  A frustrating thing.  But none of that means it's a bad thing to be.  And it's not hard or challenging or frustrating all the time, and a lot of the challenges and frustrations come not from the actual disability but from the society in which we live, which is not very accessible or welcoming.

I don't mind if people know I am disabled.  And maybe that's what "looking disabled" is all about.  If you "look disabled," people will know.  

Anyway.  Maybe I don't look disabled.  But I am.  And it's not a compliment to tell me I don't look like it.

Traveling with a Disability and a Dog

While on my recent trip, I reflected several times on how lucky I am in many ways.  I own a car, I am able to drive, I had the time and the money to take the trip - all things some people with disabilities would not have had.  At the same time, I also thought about the challenges involved with traveling with a disability and a service dog.

The trip from Ohio to Nebraska was about 14 hours of straight driving time.  Of course, no one can drive non-stop for 14 hours.  One must stop to pee and get gas, at the least.

The trip there took me longer than it would have taken many people, I think, because I have to stop frequently and stops take me longer than they might take someone without a service dog. 

Frequent stops are a must for me for a couple of reasons. 

I've always said I have a bladder the size of a pea, but really, I think I have interstitial cystitis, an inflammation of the lining of the bladder that causes UTI-like symptoms including a frequent need to urinate.  It's apparently common in people with fibromyalgia, or at least similar symptoms are common in people with fibro.  I don't know for sure if I have interstitial cystitis because I don't want to be tested for it because I think it would be pretty triggering for me with regard to my PTSD, but my rheumatologist says it's common and that the gabapentin I take should help with it.  I don't think it helps much, though.  But anyway, I have to pee often.  I'm lucky if I can drive two hours without having to find place to stop and pee.

In addition, with my back problems, moving around and stretching frequently is very important.  If I don't do it, I pay later.

Isaac does not need to pee as frequently as I do, but I generally give him a chance to pee whenever I get him out of the van.  And getting him out to go with me someplace requires putting his vest on and then taking it off again when we get back to the van.  And I try to offer him water frequently, too, when we travel, pretty much every time we stop.  All of that only takes a few minutes, but add it together, and each stop takes a little time. 

And then add in the number of stop, and it's a long long drive.

And then I have to realize that a long drive like this will probably be stressful and my anxiety and pain will end up increasing, even if I have a really enjoyable trip.

And it was a good trip.  But now I'm recovering from it.  I'm still exhausted and my fibro is acting up.

Disability and Disasters

Here's some scary reading. Many cities, including really large cities like New York City, have essentially failed, and in many instances outright refused, to provide emergency services for people with disabilities, even though the ADA requires them to do so. If you have a disability and a disaster like a hurricane strikes, you may be left to die.

http://www.yalelawjournal.org/article/the-right-to-be-rescued

Judgment

Something happened on my camping trip that, in retrospect, is interesting and important to me. At the time, it was not interesting, it was just upsetting. And I've been thinking about it a lot since then but haven't been ready to post about it before now.

First, let me say how much I did on that camping trip and how far I've come since 18 months or a year ago.

Eighteen months ago, I could not lift a gallon jug of milk. I had to buy milk in half-gallon jugs. I got my hair cut because it was too tiring and painful to lift my right arm to wash or brush my long hair. A year ago, I could hike for two miles with Isaac if it was a flat, easy trail. At one point last summer, I remember going to a state park about an hour away and trying to walk on this trail that was supposed to lead to a bridge and a really cool view, and the trail was somewhat hilly and there were rocks and tree roots and things and I had to turn back. I couldn't manage that trail. By the end of last summer, I could do three miles on an easy trail and I could even manage two miles on a difficult trail, like the one around the lake at the state park near my home, but that was with much difficulty.

But now? Well, Isaac and I hike on that trail recently. There is one part near the beginning that is very steep. I remembered the trail as having other steep, difficult parts. But now? The trail seemed much shorter than I'd remembered and also easier. When I realized we were near the end, I was confused. What happened to those other steep parts? Well, they are not very difficult for me now.

On this camping trip, I slept on the ground and got up each morning without any assistance. I felt slightly stiff when I got up. By the time I'd walked to the bathrooms, I was not feeling stiff any more. I lifted a heavy cooler. I carried some firewood. I helped put up a tent, which involved bending and getting down on the ground. I collecting kindling for the campfire, which involved a lot of bending forward. I hiked probably four to six miles a day both days, about half in the morning and about half in the afternoon, on trails that were hilly, that had a lot of steps, that were rocky, that were rough, etc.

That may not seem like a lot to some people. The fact that I can easily lift a gallon jug of milk probably doesn't seem like anything to celebrate to most people, either, but I know it is.

So that's what I did on my camping trip and that is how far I've come.

So what happened that upset me? On the afternoon of our last day, we hiked to this rock formation called Rock House. It's sort of a cave, not a huge one, but it's cool-looking. The trail is very hilly. And just before where you can enter the cave-like rock formation, there are some big boulders. You have to climb over them to get to the entrance.

Well, I considered it and decided I could not do it. I could not do it safely. I might get over the boulders but I might not be able to get back to the other side again, and then what would I do? I might slip and hurt myself. I cannot afford to be injured. Besides the fact that I don't want to deal with the pain, I live alone. I had to go home that day and unload my van. I had to carry all my heavy stuff into my house. There was no one to help me do that. Having an injury, especially a back injury, simply wasn't an option.

So I said I was going to wait on the safe side of the boulders and let my friend that was camping with me go in to the Rock House by himself. Actually, with Isaac. Isaac loves climbing over boulders.

Well, he started trying to talk me into trying to make it over the boulders. Don't you even want to try it? he said. You're missing the best part. I'll help you. Come on, you're not even going to try? Are you sure? I don't want you to miss it. Aren't you even going to try?

I was mildly disappointed that I couldn't reach the Rock House but I wasn't upset about it. I'd had a great camping trip. I did, however, get upset as my friend pushed me to try to do something I knew I was not able to safely do.

He finally relented. On the way back to the car, I was fighting back the tears. He thought I was upset over my limitations. I wasn't.

I was upset because I felt that he was judging me. He thought I should be able to make it over those boulders. He thought I wasn't trying hard enough. After all I'd been able to do on that camping trip, it all seemed to come down to a few boulders and since I couldn't get over those, well, doing my best wasn't good enough.

That feeling of not being good enough is an old feeling and I know it was not just about this hike. I grew up in a home where nothing was ever good enough.

But at the same time, I'd been feeling good about what I'd accomplished on that trip. I have been working really hard not to judge myself by the standards of other people but here was a reminder that other people are always judging. I wished I'd gone camping alone. I wanted to become a hermit and live alone in a cave or something, so I could avoid the judgment of other people all the time.

My friend apologized. He said it wasn't his intention to make me feel that way, and I am sure it wasn't. But still... other people are always judging, it seems.

Limitations

Sometimes I get so frustrated by my disability.

No, that's not quite accurate. By my limitations. By the things I can't do and want to do or even need to do.

I have been having a lot of trouble with my car and I have to get a new car. Well, a used car, but new to me. I live in the middle of no where, there is no public transportation, I cannot be stuck here without a car. It is a mile to the nearest store, and while I could walk a mile there and back, at least most days, with my back problems I could carry very little home in the way of groceries. And all my doctors are far away. I have to have a car.

Well, I do not have much money for a car, so my options are very limited. It is becoming apparent to me I am not going to be able to find anything in any kind of decent condition for what I can spend. And it is using up a lot of spoons looking. So my first thought was, well, I need to work more to make more money, and I also need to spend less money, so I should cut back on my acupuncture appointments.

And then I thought about that for a minute. That would have worked, maybe 12 years ago. But now? Work more and do the only thing that helps me manage my pain less? That sounds like a sure recipe for disaster. I can't do that.

But that is the only way I am going to be able to get a car and I need a car. And I want to be able to do it. I want to be able to work hard and then get what I need. I want to be able to do it and I just know I can't.

What I Can and What I Can't

Lately I've had several instances in which I've noticed things I've been able to do, things that in the past I couldn't do or would have had a really hard time doing, and I've really tried to recognize and celebrate these things.  It's important, I think, to celebrate accomplishments.

It's also important for me to try to keep things in perspective, to keep a balanced view of things, and it's often much easier for me to see the glass as half empty than half full.  Actually, the glass often looks less than half empty to me even if, in reality, it there is half a glass of water there.

So.  What I can:

• Isaac and I recently did a four-mile hike, then longest I've done in I-don't-know-how-long.  Since before developing fibromyalgia, for sure.
• Recently when hiking with a friend when there was a foot or so of snow on the ground, I noticed my friend was having a harder time getting up hills than I was.  I had to slow down and wait for him a couple of times.  This was a new experience because usually I am the one having trouble, the one asking other people to please slow down and wait for me because I just can't go as fast as everyone else seems to be able to do.
• The last time I went hiking in the woods with a friend, I noticed that I was having no trouble keeping up, even on muddy, slippery, uneven ground.
• A couple weeks ago, I went to the dentist to get my teeth cleaned.  Normally dental stuff makes me super anxious.  I took one of my anxiety pills before getting to the office, as I usually do.  But I realized after the appointment was over, that I wasn't anxious.  I wasn't particularly anxious before the appointment and I wasn't anxious during the appointment.  It was just... normal.  Kind of boring, mundane.  This is huge.  Really huge.
• I am looking forward to things.  That might seem small to most people but with my depression, there often is not much I look forward to.  But I find myself looking forward to things lately.

But.  Then there are reminders that I am disabled, that there are things I cannot do, at least not now.  And they hurt.  I am sad for what I cannot do.  That sadness doesn't have to take away from what I can do or from the celebration of my accomplishments, but ignoring it doesn't help, either.  At least it doesn't help me.  Recognizing it helps.  Grieving and then letting it pass.

What I Can't:

• Work.  At least not as much as I'd like, at the sort of jobs I'd like.  Today I considered applying for a part-time job working with an autistic preschooler.  I'd enjoy it.  But I had to reconsider because right now, it would be too stressful.  But I am sad about that.
• Maintain relationships very well.  Which is why I am single.  And sometimes I am OK with that, sometimes I actually prefer being single.  But sometimes I am lonely.  And I am sad that I feel like it's not so much a choice I get to make but the way it has to be.

Not All Disabilities Are Visible

That should go without saying on this blog, right?  But in real life, out in the community, I come up against this all the time.  I don't look disabled.  Whatever disabled looks like.

A couple weeks ago, there was a rep from a mail order pharmacy doing a little sales pitch in the community room of my apartment building.  She was serving free pizza, which I guess is how she figured she'd get people to show up to hear her pitch.  I decided to go, both for the free pizza and to give Isaac an opportunity to practice working in a highly distracting environment (highly distracting because some of our neighbors, his friends, people he usually gets to socialize a lot with, would be there).  Plus I was just bored.

It turns out the mail order pharmacy is a pretty neat deal.  They accept almost all insurance plans, including mine, and the cost to the customer is the same as if you were picking up your medications at a local drugstore.  I have a copay of $2.65 for most medications, which is the same amount the mail order place will charge me.  But not only are your meds delivered to your door once a month, they sort them into these little plastic pouches, labeled for each dose.  It's pretty cool.

But that is not the point of this post.

The rep asked me if I was training Isaac.

I said, "No, he's already trained."  And then I decided to ask her what made her think I was training him.

She got this deer-in-the-headlights look and said, "Because of his vest?"

I asked her what about the vest made her think he was being trained as opposed to already trained.  After all, the vest does not say "in training" on it.

She kind of stuttered and said, "I thought the vest meant he was in training, maybe?"

I said, "Sometimes people ask me that because they don't think he is my service dog because they think I don't look disabled.  Whatever disabled looks like.  You can't always tell if someone is disabled by looking at them."

My neighbors were all nodding.

The rep just looked uncomfortable.

I've had this conversation before.  Not all disabilities are visible.  In fact, many are not.  Making assumptions about whether or not someone is disabled by looking at them is not a good idea.

By the way, a friend of mine is getting ready to work with a  professional service dog trainer in order to train a service dog.  The trainer uses a wheelchair.  I wonder how many people, when she is in public training a service dog, think the dog is hers?  Because she looks disabled.  She can't be training that dog, can she?

Adaptive Equipment

I've been meaning to write this post for a while now but just haven't gotten around to it.

A while back, I finally gave in and bought some adaptive equipment to make basic tasks easier for myself.  What I bought was simple, and I'm not sure why it took me so long, or why I think of buying the stuff as "giving in."  All I can say is that I wanted to do things "normally."

Have you watched the show "Switched at Birth?"  If you haven't, you should.  It's a good show with a couple of main characters that happen to be deaf.  In one episode, Daphne, a deaf high school student, takes a cooking class with hearing students, taught by a hearing instructor.  She burns her French fries because she doesn't hear the timer go off.  She's embarrassed and discouraged and her mother says, "They didn't have a timer with a flashing light, did they?  Well, that's OK, you'll take your own next time."  Daphne says, "I can't just take my own deaf stuff everywhere," and her mother says, "Of course, you can!"

So I bought disability stuff.  Not to take everywhere, though, just for use at home.

One thing I bought was this rubber grips for opening jars.  They were very cheap and are fantastic.  I was finding it extremely difficult to open things like almond butter or peanut butter and now it's pretty easy.

I bought a scrub brush with a long handle so I can clean my bathtub.  With it, I can sit on the side of the tub and scrub the tub.  I don't have to be on my hands and knees.  I can reach the tile wall behind the tub easier, too.

I also bought a bulletin board to put on my front door.  Remember me complaining in the past about my landlord wedging bulletins into the door so that when I opened it, they would fall to the floor where I have a very difficult time picking them up?  And about Fed Ex and the U.S. Postal  Service leaving packages on the floor outside my door where I couldn't pick them up?  Well, there is a note posted on my bulletin board asking people not to wedge papers in the door or leave packages on the floor.  Papers can be pinned to the bulletin board instead.

Once I bought this stuff, it made life so much easier.  I wondered why I didn't buy it sooner.

Cure the Disabled Person? Or Cure Society?

I read an article today about a paralyzed man that was able to walk again, with a special frame, thanks to a cell transplant.

I wish they'd spend some money eliminating barriers and improving access for people with disabilities instead of trying to find "cures" to make people walk. I know most people think everyone wants to walk and should walk, and I'm sure many people that are unable to walk would like to be able to do so, but walking really is not the goal for everyone that can't walk, and I think accessibility is a goal everyone would agree on. It also changes the focus from a medical model of disability to a social model, which I think would be much more beneficial.

Do You Ever Wish You Weren't Disabled?

I read this post today at Rolling Around in My Head (excellent blog to follow, by the way) and it got me thinking.

Of course I wish I wasn't disabled.  But I feel I need to elaborate on that.  What I wish is that I didn't have pain - who wants to be in pain?  I wish I didn't have nightmares - who likes having nightmares?  I wish I was able to work, like at a regular job, because I really liked my job when I was a social worker and I still miss it more than 11 years later.  I wish I did not need to rely on SSDI - who likes being poor?  I mean, I don't need or want a lot of money but I wish I didn't struggle to buy food by the end of the month most months.

But do I wish I didn't have DID?  Nah, not really.  I don't mind having DID.  Sometimes it's... complicated or difficult, but sometimes it comes in pretty handy and sometimes it's even sort of fun.  Do I wish I didn't need a service dog?  Not really.  I like my service dog.

So there are parts of my disability I don't like and wish were different.  But that doesn't mean I dislike myself or that I think being disabled is bad.

Disabled Veterans

It's Memorial Day and I am remembering the vets that make it back from the war but live the rest of their lives with disabilities caused by the war.  And I want to tell a story about a vet I had the opportunity to talk with the other day.

He joined the service soon after high school.  He hoped to make a career of it.  He is a very bright man and had a highly technical job in the service.  I'm not providing any identifying details in order to protect his privacy, so I won't say exactly what he did, but it was something requiring a lot of intelligence and skill.

He'd been in the service for 10 years when it happened.  He was in Iraq.  He was in a vehicle with nine other servicemen when an explosion occurred.  Eight of the 10 people in the vehicle were killed.  He and one other man survived, with serious injuries.

He carries a lot of survivor's guilt, partly because he was initially supposed to sit in a different seat in the vehicle but for some reason ended up switching seats with another guy.  The other guy died.  If he'd been in the seat he was supposed to be in, he would have died, too.  This was 15 years ago and he got all choked up telling me about it.

He received a medical discharge.  He came back to the states with physical injuries, requiring lengthy hospitalization.  He also had (still has) PTSD, although apparently the VA psychiatrist only diagnosed that about a year ago.  How could anyone live through that experience and not have PTSD?  He still thinks about it every day.  He still cries about it.  He still has nightmares.

Despite having severe PTSD and lasting physical disabilities, the VA only finally declared him disabled and awarded him disability pay a year ago.  It took 14 years for him to get disability.  For 18 months of those 14 years, he was homeless, living on the street.

His wife left him shortly after he came home from the war.  She said he wasn't the same man he used to be.  This was not what she signed up for.  Well, gee, I don't think it was what he signed up for, either.

After his wife left and he was disabled and living in extreme poverty, he became depressed.  Well, duh.  Who wouldn't?  He attempted suicide multiple times.  Obviously he was not getting good mental health care - the VA psychiatrist couldn't even figure out that the had PTSD.

This would be a terribly sad story even if the guy wasn't a veteran.  But he is a vet.  He didn't become disabled in an accident.  He wasn't just born this way by some twist of fate.  He became disabled fighting in a war that our government, on behalf of all of us, felt was so important that it was worth risking lives.  He agreed to take that risk, to sacrifice his health and maybe even his life, for other people, and for a principle.

I am a pacifist.  I am opposed to war.  I don't think we ought to be fighting wars.  What if they threw a war and nobody came?  I think we should all refuse to come.

But that is not the society in which we live.  We live in a society in which we send young men and women to war.  To fight for us.

And then when they come home disabled, we don't care for them.  I find that appalling.  I do not support war but I do support the troops that fight for something they believe in.

This guy lost his wife, he suffers pain every day, he is disabled, he has PTSD, and we allowed him to live on the street for 18 months.  Think about that.  In a Midwestern city, in the cold winter, we - this society, which includes all of us - felt it was perfectly OK for him to sleep in a doorway, on cold concrete, in pain, barely able to walk, having nightmares of an explosion that killed eight of his buddies when he did manage to fall asleep for a bit.

How is that OK?  How is it that we can allow that to happen?

It's easy to say well, that's not really my responsibility, it's not that I think it's OK but what am I supposed to do about it?  I don't work for the VA, it's not up to me to decide who gets disability.  What am I supposed to do, anyway?  Invite homeless vets into my home to live?

But really, it is my responsibility.  It's is the responsibility of all of us.

If it's not OK with me, I  need to do something about it.  If I just passively accept it, and allow it to happen, then it must really be all right with me.

What am I going to do about it?  I don't know.  I have no idea what there is to do about it.  But I'm gonna find out.

What about you?  Is it OK with you?  And if it's not, what are you going to do about it?

Oh, You'd Like to Have Medicaid?

On the gastric bypass forum on which I participate, someone asked a question about whether or not Medicaid would pay for blood tests.  I responded, saying that Medicaid in Ohio has always paid for my blood work but that Medicaid differs somewhat from state to state. 

Someone else posted, saying, "WOW, so i could get  surgery, labs, meds, vitamins, protein drinks all covered!! can i also get the plastics covered to!!!!!!!!!!!!!!   may have to look into how to get this, i have BCBS."

Oh, yes, I am so lucky to be disabled and poor so that I can get Medicaid. It's ever so much nicer than being healthy and able to work and able to have real health insurance.

My response was, "Medicaid in my state does not cover OTC stuff like vitamins or protein drinks.

But if you'd like to get Medicaid, I'll tell you how I did it.  All you have to do is become disabled.  I did that by being sexually abused as a child so that I developed severe PTSD.  So go get sexually assaulted a whole bunch of times and then spend lots of time on locked psych wards taking medications with horrible side effects.  Do that for about 12 years.  Try to work and keep a job during all that time.  Try to kill yourself a couple times in there, because the flashbacks are so horrible.  Have nightmares almost every night.  Then have your psychiatrist and psychologist both recommend you apply for disability.  Quit your job.  Go the the social security office and fill out a bunch of paperwork.  Move in with a sympathetic friend while you wait five months to find out if you will get SSDI or not, because you have no income and can't afford to pay your rent.  Then, when you start getting SSDI, go apply for Medicaid.

Does that really sound like something you'd like to do?"

Financial Assistance for People with Disabilities

I wanted to provide links to a couple of articles about sources of financial assistance for people on disability.

Financial Assistance for People with Disabilities

Help for People Waiting for Social Security Disability Benefits

Finding some source of assistance while waiting for Social Security disability benefits is crucial because the process of getting disability from Social Security can take a long time.  It generally takes three or four months from when you apply to get a decision, but only about 30% of people get approved the first time around.  Most people have to appeal.  It can take a year or more before you start receiving benefits.

I was really lucky when I had to stop working and applied for disability.  It took only four months for me to get approved and I did not have to appeal.  I was approved on the first try. 

I also had a retirement fund that I was able to cash out.  Because I was not at retirement age, I had to pay a penalty.  I don't remember how much it was, maybe 10%?  Also I had to pay taxes on it, so I did lose a good bit of it by taking the money out early, but if I hadn't had that, I would have been in serious trouble.  I was able to live on that retirement fund money for the four months until I got my disability.

I talked to a lawyer that specialized in disability claims when I was applying and I asked him what people live on while they wait.  He told me  many of his clients ended up homeless, living in shelters or on the street, while they appealed denied claims for disability.  That was really scary to me.

So Far from Normal

Sometimes I see people moving in a certain way or doing something I just know I couldn't do because of my back and I am struck by how far from normal I am.  And I know there was a time I could do those things, too, but that was long ago.

Yesterday I was watching Master Chef online and the cooks were preparing lunch for a bunch of surfers and at the end, the surfers were supposed to vote for which team they thought made the best fish tacos.  And, ick, but who ever thought fish should go on a taco?  But anyway, to vote, the surfers stood on one surfboard and then jumped onto either the red board or the blue board, to indicate which team's tacos they liked best.  And the thought occurred to me that I would have trouble just stepping up onto the first surfboard, let alone jumping onto another.  But they were all doing it easily.

Also, for some reason, the other day I was thinking about my old apartment when I lived in Cincinnati.  I had this really awesome apartment in a really old building.  But there were three stairs up to the front door and there was no railing.  I had a friend that has multiple sclerosis and she had a hard time going up those stairs and an even harder time going down them.  I didn't have any trouble, but it occurred to me that now I would.  Especially in the winter, if there was snow or ice on the steps.

It's hard to believe I ever took such things for granted.