Friday, September 27, 2013

Trapped

Trapped


If we don't change, we don't grow. If we don't grow, we aren't really living. ~ Gail Sheehy

Someone once asked me how long it took me to accept my disability. My response was that you never really accept it; you just learn to live with it. Because of this, I realized early on that I was not a great peer counselor for a person who had experienced a new injury. After a spinal cord injury, there is a long period of denial. The adjustment is even longer if your spinal cord injury is an incomplete injury, one that generally involves the gain of restored function sometimes for several months afterwards.



Many who have experienced a spinal cord injury have been fortunate enough, with a lot of rehabilitation, to walk away from their injury. For this reason, it is good that an individual does not lose hope. They may walk, but usually their entire perspective on life has changed. Until you have had to relearn how to scratch your nose, and to retrain your bowel and bladder, you have no idea of how important those functions are.


Life is not fair. Life can be flat out cruel, and loved ones die too soon. It is of no surprise that very few people want to hear this initially after they have experience any hardship. You can try to justify this with your personal religious beliefs, faith or whatever. Justifying why things have happened doesn't make life any easier.


I once said that I had heaven on earth. Several weeks later, I broke my neck. Oh, how that perspective changed very quickly. On top of all that, my life continued and real life issues started happening. (Many events that were way more painful than my neck injury.)


My house actually blew up. My hot water heater relief valve did not relieve. The explosion literally picked up my 1850 Greek Revival house and dropped it back down on its foundation. I went from feeling as if I was on top of the world to being a homeless, dependent quadriplegic. With a blink of an eye, life can change. That is simply life. Finding the strength to keep moving forward is the tricky part. Somehow, I did.


As I grow older, I try not to let the simple fact that it is taking me longer to take care of myself get me down. I have reached a point where I have to say no more frequently about traveling and going to special events. I am also at a point where I have to re-examine what I may need to maintain my independence. None of this is easy.


Why do I advocate for better transportation? Because I know firsthand what it actually feels like to lose this freedom. You feel trapped. After over a year of rehabilitation and a long struggle to regain my independence, I was also able to relearn how to drive a car with handcontrols. I enjoy this freedom but I also know the reality that lift equipped vans can occasionally breakdown and uninsured motorists can sometimes total them too. This I know from what was supposed to be a fun Thanksgiving trip to Florida.


In our lives, we survive through one tragedy to the next. In between, we try to embrace many happy moments. It is in those moments that things make sense. Life is not always a garden of happiness. Our gardens grow, produce and delight. They also get eaten, diseased and die. If we can focus on what we can successfully grow, we are good.

Friday, August 16, 2013

Tattered and Torn: Smiley


Smiley, a happy little dragonfly, has been hanging out in the garden a lot lately. I think that she is curious and somewhat leery about this person cruising around in her wheelchair taking tons of photos of flowers, butterflies and of every kind of bug that she sees. She's suspicious yes, but not afraid, as long as she keeps a safe distance away.


A new friend of mine this past week was curious about what kind of camera I was using to 'make' my close-up photographs. I have had the privilege and sometimes frustration of living my life these last 15 years with a real fine art photographer. I differentiate with the term 'real' because at first my objective as a photographer was to simply take pretty pictures. Pretty pictures of life in our gardens. Life isn't always pretty, but having the ability to see the beauty in everything possible is what seems to make it all worthwhile. I sometimes will crop out the ugly parts of a flower by zooming in and showing off only the 'pretty' part. My new friend asked me very nicely if she could edit my photograph of 'Smiley', but it didn't occur to me until later what she probably had in mind. My dragonfly had a torn wing. At first, I thought about 'mending it', so to say, with Photoshop, but I realized that editing it would remove the life I saw in Smiley. That torn wing was a reflection of her life. It reflected her character as a possible champion from a battle she fought and survived. To hide or fix her wing would take away that part of life in her that I could relate to.

The most beautiful people I've known are those who have known trials, have known struggles, have known loss, and have found their way out of the depths. ~ Elisabeth K├╝bler-Ross


I remember years ago a friend asking me why there weren't many pictures of me that showed my wheelchair. I had never really noticed that that was the case. Before that time in my life, I do believe it was difficult for many people close to me, including myself, to see my wheelchair. Somehow maybe, the wheelchair made me less attractive, and served as a painful reminder of too much pain or loss. I'll never forget my first outing from the hospital after breaking my neck. I was wheeling outside of Boston University Hospital when two guys walked by and turned and looked at each other and said, "Did you see her? She was pretty too!" Yes, I wanted to respond, "Pretty people break their necks too!"


I know I have said it before, that "the wheelchair is not me", but it is a part of me. Kind of like my high top sneakers. At the end of the day, both are next to my bed. The flowers, the veggie gardens, the bugs, and the gardeners aren't perfect. We are, however, full of life. I am so thankful that there is a change in attitude and acceptance from many now who actually do see people with disabilities as an integral part of our world.



“Beautiful young people are accidents of nature, but beautiful old people are works of art. ”
― Eleanor Roosevelt



Monday, March 4, 2013

Garden On! Thanks Y'all! (You All)



It's been a year since I really began Access to the Garden. My original intent with Access to the Garden was to spare my non-gardening friends on Facebook from my passion for gardening. (I also needed a cheap way to store my garden pictures.) As I've connected with more and more gardeners, I have discovered that there is a genuine interest on my page of people wanting to continue their passion for gardening as well, regardless of age or disability. We are all gardeners, some are farmers and some simply enjoy beautiful flowers. We share ways of making our passion for gardening a little easier, and often, ways of making it more affordable.


Unlike a lot of pages out there in Cyberland, I do this for free. Not for profit, and generally at a financial loss. If I can inspire anyone to do anything, then I have gained personally from this endeavor. My goal for the next year is to do something even more productive with my website and blog, and to maybe use them to show off even more affordable gardening stuff and cool gardening ideas. My other goal is to keep writing about GARDENING from my perspective, as a quadriplegic who is getting older. More tips and tricks from this Gimpy Gardener! Your feedback is always appreciated, unless you are a cat hater.....



This week in the garden, my husband and I (I can't take all of the credit) have been busy planting cool weather veggies and adding compost to our beds. We have also planted a few burlap bags with potatoes. My elevated tables are also ready for more crops. Roses and Butterfly Bushes have been pruned. Daffodils, Lorapetalums and Azaleas are starting to bloom as well. Spring is definitely in the air, although the temps are a little chilly today!

Potatoes in Sacks


Out of the garden this week, yet in the garden too because I met him cyberly on Access to the Garden,  I encountered a design professional who truly 'gets it'! I have never felt so encouraged in my life! I just wish there were more professionals with his kind of common sense attitude. Please check out Billy Goodnick's blog at www.edhat.com, KeepYour Garden Out of My Face. Excellent! This guy, this Landscape Architect,  certainly understands that if one cannot travel safely on a sidewalk, one cannot get to where they need to go, whether it is to a community garden, bus stop or restaurant. Blocked access prevents independence and can be quite dangerous!


Another rewarding experience for me last week was that a group of my friends with the SC Spinal Cord Injury Association had the opportunity to go to a Stingray's hockey game thanks to the goodwill of the City of North Charleston and the North Charleston Coliseum. One flying puck didn't stop my friends from having a terrific time. I'm glad I could help. Life with a disability isn't cheap, and many would have never have had the opportunity to go. Awesome!



If I don't get out soon to my new elevated gardens with my trowel in hand, I will not have a garden to take pictures of or one to eat from! Thank you all for a very REWARDING and SUCCESSFUL year!

Wednesday, February 20, 2013

CARTA Board Meeting: Trees are Important, but so are Humans!



As I was leaving, I commented that had the town truly understood the impact of the route change, less landscaping may have been included in their recent widening project of Route 17. As the Administrator and Creator of Access to the Garden, landscaping is incredibly important to me. The quality of a human life is even more so. ~ Brenda Parent

TO: CARTA Board Members
DATE: February 20, 2013
RE: Recent changes in Route 401 and cuts to Paratransit Service

Dear CARTA Board members:

https://www.facebook.com/photo.php?fbid=10151724827703238&set=o.240249869823&type=1&theater

Recently I received a notice from Veolia Transportation stating that due to recent route changes in Mount Pleasant that I would no longer be within Tel-A-Ride’s ¾ mile Paratransit service area. I received no further explanation other than the fact that these changes would start within ten days.

As a long term resident living with a disability, I originally purchased my home, stayed in and modified my home on the basis of growing old and aging in place within my home. Having access to accessible transportation is not an option for me, I have been a quadriplegic since 1983. I chose my home based on the proximity to hospitals and other necessary services. I chose my home based on the availability of public transportation as well.

After contacting Jeff Burns with CARTA, I was informed that this change would only affect 14 individuals. This information is incorrect and falsely represented based on the fact that two additional riders who live further back than I do and on the marsh within my neighborhood did not receive notification. Also considering that our population is aging very quickly, and by the year 2030 over 20% of our population will be over 65 the impact is potentially huge.(1 in 3 people in this age bracket will have a disability.)

After reviewing Google Earth map, I ascertained based on an older map which did not accurately reflect the widening of Route 17, that I as ‘the bird flies’ was within .78 miles of the frontage road. After speaking to Jeff, the only solution was for me to wheel approximately 200 feet to be within the service area. Only on the days that are above 65 degrees and sunny, this may not be an issue. The whole purpose of Paratransit is to actually provide a door to door service when needed to individuals such as myself. As I get older that 200 feet might as well be a mile. This decision is absurd and may be medically impossible for me some days! Considering the fact that they will be expanding Paratransit service on both the Isle of Palms and Sullivan’s Island, two areas that will no longer have a fixed route service, this does not make sense.

After contacting Project Action, it was brought to my attention that CARTA held a poorly publicized meeting on this route change in December. I had absolutely no idea that this was going on and that it would personally affect me and potentially so many others to the extent that it will. Without Paratransit, I will be forced to eventually move.

“You can tell a lot about a society by how it treats its most vulnerable.” This statement couldn’t be truer. After reviewing a powerpoint of CARTA’s presentation on these route changes, I saw absolutely no indication that service to those who are the most needy of public transportation would be cut. This is appalling to say the least. I am shocked that the Town would allow such a thing to happen to its residents if they indeed realized that this was an actual consequence of any route change.


http://www.townofmountpleasant.com/documentcenter/view/6105

This letter is my written notice, in which I am not obligated to give, to inform CARTA and its supporting municipalities that I will be filing a legitimate complaint with the Federal Transit Administration’s ADA Civil Right’s Division regarding public notice, and specific ADA requirements for public transportation both with Paratransit and Fixed Route services. I will also be filing a Title II violation with the Department of Justice regarding non-compliance issues with all of CARTA’s facilities. I have no choice other than to exercise my Civil Rights.

Knowing that for years I volunteered to make CARTA a better and an award winning transit organization, this truly saddens me. For over twenty years I have watched accessible fixed route buses travel to inaccessible bus stops. What an unfortunate waste of money.

Brenda B. Parent
Certified ADA Coordinator







Tuesday, February 12, 2013

CARTA ends Paratransit Service for Many Living with Disabilities


The Charleston Area Regional Transportation Authority (CARTA) will be ending its specialized transportation Paratransit service for many people living with disabilities in the Mount Pleasant area who do not live within 3/4 of a mile of CARTA's current Route 40. Paratransit service, Tel-A-Ride will be available on the Isle of Palms and on Sullivan's Island, two areas that will no longer have a fixed route. The Federal Transit Administration's ADA policy requires coverage to areas within its core area that are not within a corridor. FTA ADA 49 CFR 37.131 - Service criteria for complementary paratransit. (ii) Within the core service area, the entity also shall provide service to small areas not inside any of the corridors but which are surrounded by corridors. Many residents have received notice that their transportation will end in ten days. For many that will be an end to their employment and independence. CARTA's current Fixed-Route service is not accessible to many people with disabilities who use wheelchairs and to those living with other types of disabilities that prevent them from traveling independently.

Although my neighborhood is within 3/4 mile of CARTA's route to the schools, I will also no longer have the opportunity to utilize Tel-A-Ride. I will be working diligently to have this issue resolved. I, like many others, moved to my neighborhood and have remained in my current home because of the availability of public transportation. Without public transportation, I will have to move. I will no longer have the opportunity to age in place. People living within East Cooper should be outraged by this pitiful reduction in service. In my neighborhood alone an elderly widow, a young man living with Down Syndrome and myself, a quadriplegic who uses a wheelchair, will be affected by this horrendous decision to cut services. The community as a whole should stand up for what is right. There is an appropriate saying that comes to my mind, You can tell a lot about a society by the way it treats its most vulnerable citizens, our seniors and people with disabilities deserve more respect. This is wrong.



https://www.facebook.com/photo.php?fbid=487230701340136&set=a.229622637100945.60222.225535737509635&type=1&theater



Wednesday, January 23, 2013

Wildflowers and Weeds


A weed is but an unloved flower. ~ Ella Wheeler Wilcox

Wildflowers and weeds, they seem to be almost impervious. Their ability to grow anywhere and everywhere is quite amazing. Our tolerance of them is entirely individual. Do you dedicate a space and allow them to do their own thing and to attract the necessary pollinators to your garden or do you constantly try to eradicate them? I'll never forget purchasing a really pretty Lyreleaf Sage in my earlier days of gardening called Salvia lyrata and having my good friend very quickly inform me that the plant's common name was roadside or wild sage. Yes, you can find it growing wild just about anywhere. Is a weed simply a plant growing somewhere that you don't want it to grow?


I once watched a video of two guys exploring the depths of the Congaree National Swamp. A place that I would probably never want to get to physically. (Snakes and mud are really not my thing.) I loved just watching the video, although some people that I know with disabilities would enjoy taking part in that kind of adventure. The Congaree National Park has a wonderful 2-mile long and very accessible boardwalk. I'm not certain to what extent of access that the park's other trails provide, and these two guys were definitely not on any trails. The video allowed me to see even more of the swamp. I've suggested this type of added accommodation often especially to historical structures where physical access may be truly difficult. i.e. a historical ship where certain areas other than the main ones are not feasibly passable to anyone with any type of mobility disability, a lighthouse or to the various floors of a Nationally Registered Historical House Museum (Most are obligated to provide access from accessible parking to at least the first floor, bathroom and gift shop.)


When I was younger, I would do everything in my power to avoid attracting any type of negative attention or to be perceived as one of those angry, negative people with a disability whose life would be unbearable to have to live. I have had a really good life in an environment that would often defeat many. I now know much sooner when I am apparently wasting my time. I will make suggestions to anyone willing to hear me and who legitimately wants to make improvements. It's simply wonderful when they want to do it because "it is the right thing to do!" It's up to them to implement any change. I have to laugh, and laugh often. I know that there are certain things that I can't laugh about. I do find myself quite frequently shaking my head in disbelief and asking myself, "What were they thinking?"


Years ago, I would also do everything in my power to not be perceived as disabled, everything except wearing pantyhose and 4 inch high heels. (I never liked them to begin with.) I drove a sporty car, dismantled my wheelchair 6 or more times a day, and without help because I could. I would go to the beach and crawl across the sand to go for a swim. I was young, and unstoppable! Kind of like Bermudagrass, although I'd rather be perceived as more of a wildflower like Rudbeckia. My husband would not hesitate to pull me up and down steps to visit gardens that I would otherwise miss out on. He too is getting older, and he can no longer do that physically. (He's had three hernias.)


INDEPENDENCE is what it is all about, and maintaining as much as possible for as long as we can. One of my neighbor’s last week took his own life. He had been living with Parkinson's Disease for a number of years and this past year he had been forced to use a wheelchair. Sadly, some people would rather end their own lives if they have to live their lives incapacitated in any way. I, fortunately, do not share this attitude. I will be the old lady teaching others how to do wheelies!


I reflect on this because it is important. I’m not going to say that that attitude is right or wrong. It’s all relative to other things, pain as well, and I’m not in a position to judge. I’ve always felt that dealing with the sudden loss of independence as an older adult would quite possibly be more difficult for a person to deal with. Although, there have been a few really awesome, older folks who have inspired me along the way and many of whom I’ve had the pleasure of assisting with maintaining a quality life. Many are truly appreciative for the life they have left.


When I encounter an entity, business, person or organization that would rather ignore any obligation to provide or enforce equal access, I see it as if they have the attitude that a person with a disability isn’t a person worth accommodating. After all, if they valued us as human beings, they would do everything possible to include us, right? Wow, it all makes sense! The American's with Disabilities Act (ADA) isn't just a building code, it's often overlooked as the Civil Right that it is.


As harsh as this may sound, it can often seem like the reality. Whether a person goes to a large retail outlet or to a small mom and pop restaurant, the obligation to provide equal access to goods and services is there. Until people can realize that it is flat out dangerous for a person to park in a narrow, non-compliant parking space, things are not going to change. I have come too close to getting hit too many times. Most people with disabilities will avoid going to any place that they can't travel to safely. No one wants to endure a dangerous sidewalk or to be forced to travel down the middle of the street. This is an ongoing and very legitimate safety concern. No one should have to endanger themselves either by having to pull or carry someone with a disability.


In the mean time, I will pick and choose where I go. Even if I have to drive to another county to experience a botanical garden that I can easily enjoy with accessible routes and pathways. I will continue to grow my own veggies and tend to my own garden as long as I can, because this is what makes me happy. Life is too short not to be enjoyed. I will also continue acting sometimes as a persistent weed, although I may wheel away occasionally to give people time to react, because I truly care about other people having the opportunity to live an independent and meaningful life. I am inspired by those with so much less than me, and I see their lives as worthwhile. No one should be excluded or treated in anyway that is less than first class. It is my hope that this next generation, wouldn't have it any other way!









Thursday, December 13, 2012

Twenty-nine, Again!

Twenty-nine, again! December 13, 2012


“Only the Good Die Young.” ~ Billy Joel

Not everyone has the opportunity to celebrate two 29th birthdays. The only difference with my second one is that my father’s furrowed brow is now staring back at me in the mirror. Most people that I have encountered, who have experienced a traumatic Spinal Cord Injury, can remember quite well the day and quite possibly the exact moment of the onset of their paralysis, no matter if their spinal cord was completely or incompletely severed. The anniversary of this date is generally celebrated as a second birthday to celebrate the second chance of life. We lived.


I maintained consciousness throughout my car accident. I can quite vividly remember seeing the sign indicating the winding road ahead, feeling the out of control spinning of the car on the icy road, seeing the telephone pole the moment before the actual impact, looking at my legs draped over the seat in front of me after the collision with the pole, and watching quite intently the very concerned face of a nurse that held my neck until the paramedics arrived. She was my angel that morning in December back in 1983. There is no doubt in my mind that because of her great care, my spinal cord was not completely severed at the cervical level of C 5/6 and why I have movement and feeling throughout my body. I can contribute my incomplete paralysis and resulting independence to her and to a lot of hard work.


The only thing on that day that I can’t remember is what happened to the cup of coffee that I was holding? (I wasn’t driving.) Seriously though, I do think about that sometimes. Technology today has allowed me to use google maps and travel down the actual road and find the exact spot where the ice had accumulated on the road. I virtually revisit that site occasionally and it gives me a better understanding as to why we see grave markings along our highways.


Last night I caught the last part of an HBO concert that was a fundraiser for the victims of Hurricane Sandy. I was thrilled to see that Billy Joel still had what it took to belt out his songs and to play great music on his piano. Unlike other performers before him, he did not come across as an old man trying to relive his good ole rock and roll days. His shirt remained buttoned, and he sang with his usual grace. His song, “Only the Good Die Young” reminded me of a joke used back in rehab. We had all jokingly concluded that we hadn’t died because we just weren’t good enough. Grin.


There were about 28 of us on F5 at Boston University Hospital at Christmas, and most of us were in our twenties. Sadly, many have probably passed away since then, but I will never know who for certain. Over the years since then, I’ve only managed to keep up with one very special friend.


We have all moved forward with our lives. We have all had to deal with all of life’s aches and pains. Our disabilities didn’t exempt us from dealing with the usual onslaught of real life issues. Today, and every day, I am indeed grateful for life.


It wasn’t until years after my accident that I had had the epiphany of how close to death that I actually was. It wasn’t until I became a parent that I realized how much my parents went through emotionally with my injury and with my brother’s unexpected death a few years later. As a parent, some things remain unthinkable, especially when it pertains to your only son who is serving in the US military.


Christmastime can be either painful or happy. We can either dwell on the life that has been lost, or appreciate the life that we have been given. We can isolate ourselves, or we can reach out and volunteer and do something worthwhile. We can donate food and blankets to those in need. We can live. We can share pretty 'feel good' flowers on facebook. We can focus on positive energy and on doing the things that basically make us feel good. It’s okay for all of us to remember, if we are old enough to, our lives before. It is from those many experiences that we grow up and try to do remarkable things. Sometimes we all need a little kick in the butt.


There was another worthy quote that I read this week regarding being able to see what is right in front of us. It’s all there; we just have to be able to want to see it. It wasn’t until yesterday that I realized that Magnolia Plantation and Gardens, with over one thousand cultivars of Camellias, had one of the most extensive collections of Camellias in the world. Amazing beauty!

'If you can't find something worthy to photograph within forty feet of where you stand, you are not seeing.' -Ruth Bernhard.


My last visit to Magnolia Gardens was incredibly frustrating because the accessibility was horrible. They had used large white stones on their pathways and their trails were nearly impossible for me to navigate with my wheelchair. It is now my mission to find out if things have improved. There are just too many beautiful Camellias there that I truly want to see!

©Susan Richards, with permission

If I go awhile without writing, it’s because I know I write a lot. It’s not because I feel I don't have anything to say. That’s generally not a problem for me. Sometimes, I simply do not write because I honestly just don’t want to say it. Writing means feeling. Some feelings are better left unsaid, at least for a little while.


A good friend asked me very recently why I didn’t ‘pop’ a newly opened entity for non-compliance with accessibility. My response, was because I liked the person who owned it and that I enjoyed eating there. Stomach before access, I guess that makes me a bigot. The truth is that the entity that was originally there should have never received their certifications that allowed them to operate as a business in the first place. They were built after 1990.Their accessible parking spaces and curb ramps never met the state code that was applicable then, never mind compliance with federal code.


My opinion is that the new business should have been required to bring the parking lot and ramps to code before they opened their doors for business. They’ve been informed, now I’m just waiting for a response. This shouldn’t be my personal responsibility or anyone’s with a disability. It gets very old, especially when you just want to go somewhere to eat a good meal. The press could bring them some unwanted media attention, and someone could quite easily come along and ‘pop’ them. They would certainly be within their legal rights to do so. I, in all actuality, detest conflict and would rather mediate everything.


I encounter this type of scenario entirely way too frequently. I 'huff and puff' occasionally, but I rarely blow anyone’s house down. I very easily could, and maybe that’s what intimidates some people. I know my civil rights and I know that what I achieve with accessibility will ultimately make life better for a lot of people, even for the aging ‘old farts’ that opposed my efforts over twenty years ago. (I can say that because I am quickly becoming older too.)


My survival is to do what makes me happiest.I simply refuse to allow ignorance or someone's lack of compassion to affect me otherwise. Life is too precious. Somehow, I think that my love of life is reflected in my flower pictures. My flowers are quite expressive. Sometimes, I can feel them flapping in the wind as if they’re dancing. As a relatively new photographer who loves gardening, I’m intrigued by the natural beauty of all plants. They make me smile, and sometimes they may actually make me say ‘wow’. They simply make me feel good, and to be able to share them with others makes me feel great!