A recent article in the Miami Herald brought up some questions. If you are a disabled parent, do you receive the same respect and support as parents without a disability, and if not, how prevalent is the inequality?

The story was about a mother who suffered a back injury that created a significant amount of pain, preventing her from working and leading her doctor to recommend narcotic pain pills. Because of her dependence on the medication, the court ordered her to complete a variety of parenting tasks which she failed due to a lack of financial resources. Her child was then taken away and given to the grandparents.

This situation had a few variables involved that have no relation to a disability, but it inspired us to do some research. It turns out that there are quite a few Internet and print resources that are aimed specifically at the disabled parent. Some are for women only and others offer support to both sexes. After reading just a handful of sources, it became apparent that there are indeed issues faced by disabled parents that need attention.

“Many doctors may have difficulty dealing with women who are both pregnant and disabled. We blur their categories,” says says the DisAbled Woman’s Network (DAWN), “Physicians lack models for dealing with us. Many have a hard time saying, “I don’t know how to deal with this, but I’ll try to find out as much as I can and help you as best I can.” Rather than deal with us honestly, they may urge us to abort, or be unsympathetic.”

Added to negative physician attitudes about disabled parenting are complications that arise from pregnancy that are specific to each disability. Spinal cord injuries (SCI) are already prone to cause urinary tract infections (UTI) and with the addition of a pregnancy and the strain it places on the bladder, the potential significantly increases.

DAWN also points out that there are also issues with medical equipment not being safe or properly designed for gynecology exams on those who are wheelchair dependent or who have little or no use of their limbs. In a poll that resulted in 245 respondents, DAWN found that the disabled mothers who had children experienced the following problems: 25% had housing issues, 25% had difficulty transporting their children, 33% had trouble with child care, 32% had a problem with household tasks and 33% found that social/medical workers didn’t understand their situation.

The Family-Friendly-Fun Website has something similar to say, “For too long, people with disabilities had been told that having families of our own was not an option. The truth is, though, that we have always been parents, and as our society evolves, more and more of us will have access to that opportunity.” They go on to add that “Being disabled parents in the twenty-first century is slowly starting to improve but unfortunately disabled parents are still sometimes met with discriminatory attitudes both by professional organizations, and by the family and friends of the disabled parents themselves.”

Adaptive equipment is out there, but it’s rare and considering how individual-specific each situation is, coming up with a “one size fits all” option for those with disabilities is out of the question. Certain things need to be taken into account that the typical stores seldom provide - accessible changing stations and bathing equipment, cribs and beds, harnesses to allow quadriplegics to hold their child and so on.

Luckily there are organizations that are working to not only support parents with disabilities, but also to draw attention the the unique challenges they face and how our communities can better assist them. Here are some resources to get you started:

Parents with Disabilities Online (Includes some adaptive equipment.)

Disability, Pregnancy & Parenthood (Has an online or print journal with stories of disabled parents and how they are coping.)

Disability in Pregnancy and Childbirth (A book that is highly recommended on a variety of Websites.)

We are pleased to share this guest post with our readers:

I’m Megan. I was born on May 6, 1985. I’m 23 years old and I am so thankful that I can say that. I nearly died when I was 22.

It was November 26, 2007. It was the night before Thanksgiving. My partner Shannon & I had been going through a rough financial time, but finally got back on our feet. So we decided to ask off work to visit my family in Charlotte for two days. Originally we had planned on just the two of us going the night before and having a romantic dinner out and then spending the holiday with the family. However, we learned that my sister had just recently gotten back together with her husband and we thought it would be nice to include them in our dinner since we didn’t get to see much of each other.

This soon turned into a dinner of seven because my step brother and his friend decided to come along, and so did my sister’s husband’s friend. At first the dinner was all kinds of awkward, because half of us didn’t even know the others. But, it wasn’t anything a little alcohol couldn’t fix. Soon, we were all laughing and joking and having a great time. The fun didn’t stop after dinner. We were having so much fun we decided to go next door to the pool hall. The alcohol didn’t stop there either.

It was around 9:30pm and we had a designated driver to get safely back to my parent’s house. My sister’s kids were being babysat by her husband’s dad, so we figured why not squeeze just a little more fun in there? We went back to their house to do some more drinking. While hanging out in their garage, we caught eye of the ATV. We thought it would be a good idea to hop on and ride it around the neighborhood a few times.

Shannon got on the back with me once, but was too scared so she decided not to ride it. Something you should probably know about Shannon is that she is not a risk taker. She’s more like a maternal nurturing person. She likes to play it safe and make sure everything is always okay. This night, she decided not to nag me because she knew it had been a while since we’d gotten out like this with no worries and didn’t want to ruin my fun. She stayed in the garage and chatted with the guys while I rode the ATV with my sister. We pulled back into the garage and turned it off and were ready to leave, when my sister and I decided to take it out one more time.

I remember driving it down the street. I remember my sister yelling “Slow down, Megan! You’re going too fast!” I remember U-turning to go back to the house. What I don’t remember is the wreck. All I can tell you is what Shannon and my family have told me, and try to piece it all together.

Here’s what Shannon says happened:

“I was talking to the guys in the garage, when Megan’s step brother (our designated driver) asked, ‘Do you guys hear that? It sounds like Katie yelling.’ Of course, we didn’t hear it because we were all too drunk. About 5 minutes later, he said ‘I’m going to go find out what’s going on.’ Then Megan’s sister’s husband decided to go check things out because he wasn’t back yet. I was still chatting it up and was just waiting for them to pull into the garage when the husband comes running up to us. He tells his friend to lock up his house that we had to go to the hospital. They’d been in a wreck. I laughed it off. I really had only known this guy one night, and the whole night he’d been joking around, so I thought he was kidding. When his eyes told me a different story, I knew something had gone terribly wrong.

I leaned out of the garage and peeked down the street. All I could see were ambulance lights. I cannot describe the feeling that overcame my body. I kicked off my 4 inch heels in the yard and started running with everything I had. ‘Megan, Megan, Megan, Megan’ that’s all that came out of my mouth with every single step. It was like the world stopped and everything was just swirling around me. I passed the ATV which was up against a tree. They were about 30 yards away, one on each side of the ditch. Katie was screaming ‘Help Me! I can’t breath!’ There were about 10 neighbors all standing around.

Megan was on her back surrounded by EMT. I leaped down on the ground next to her. She was lifeless. Her eyes were open but there was nobody inside. ‘Mam, you need to step back.’ Was all I was told. Nobody to tell me everything was going to be alright. I was barefoot, alone, cold, and scared to death. My everything was about to be nothing. How could I be the last one to know what happened? I could have stopped this from happening if I would have just told her to get off. I could have helped her if I was there sooner. This is my fault. The ride to the hospital was the worst ride of my life. Following those flashing lights knowing she was inside and I couldn’t ride with her, was the absolute worse feeling. Getting to the hospital and not being able to see her, was horrible. One second we were laughing and talking and hugging, and the next second, she’s gone.

I saw her being removed from the ambulance and I noticed all of her clothes were off. They had taken off her clothes. I felt so violated for her because I did not know at the time the extent of the injury. The EMT told me she was scared and drunk and she’d probably be fine. I waited for her to walk out of the ER room and come give me a great big hug. This never happened. When I finally got to see her, she looked like a corpse. She was purple, not talking, not moving. Was she going to die? That’s when the trauma doctor told me what had happened during the wreck. Her T-8 & T-9 vertebrae were wedged together. Her spine had been smashed. I had no idea what this meant because I had never had to deal with anything like this before and had no knowledge on the subject. ‘What does that mean?’ I asked him. ‘Is she going to be okay?’ I waited for his reply. When he cocked his head and scrunched his face I knew it wasn’t good.

‘She’s going to have a long hard road ahead of her. She smashed her spinal cord. She has no feeling or movement from here down.’ He pointed above her belly button. I didn’t know how to take this. I was thankful she was alive but I didn’t know what that meant for our lives. I went two rooms down to check on her sister. I first heard she had one broken rib. Then I heard she had two broken ribs. I eventually came to find out she had eight broken ribs (all of them), a broken shoulder blade, broken collar bone, and collapsed lung, all on the right side of her body. She had 2 children to care for at home. How could this have happened? What are we going to do? I have to be back at work the day after tomorrow and so does Megan. What’s going to happen? I ended up calling my boss, and getting as much time off as I needed (which happened to be a month). I still to this day cannot thank my boss enough.

The first two nights she had to stay in ICU to be stabilized. I had to spend Thanksgiving day without her. How could I eat? How could I sleep? How could I be enjoying the holiday knowing what she was going through in the hospital? Of course, she had no idea because she was basically in a coma for about a week. I just couldn’t eat knowing she couldn’t. I moved the food around on my plate and that was about it. I don’t even think I could cry anymore. I had shed so many tears in such a short amount of time my body was exhausted. This did me no good either, because I couldn’t sleep. After she finally got her own room I didn’t leave her side. I stayed in that hospital room 24/7. Sure she may not have spoken a word, or looked at me, or held my hand, but I was going to be there when she came out of it.”

That’s what Shannon has told me from day one. About a week later when I did come to, I had already had back surgery. My surgeon said it looked like someone took a sledge hammer and smashed my spinal cord on a table. They did testing and confirmed I was an ASIA A Complete. For those of you that don’t know, that means that I had no feeling, no movement, and my spinal cord was so damaged I most likely would not get any of it back. I did not see this as depressing. I try to look at life as positive as possible. It’s almost as if I already knew what had happened to me before being told. The first words to come out of my mouth that I still say to this day are “I don’t need to walk to love.” (more…)

Last Friday night Houston Texas receiver Harry Williams sustained a spinal cord injury (SCI) during a game against the Dallas Cowboys leaving him temporarily paralyzed. Monday he underwent surgery to fuse two vertebrae in his spinal column, a procedure that will hopefully allow him to lead a normal life, but won’t put him back in the game.

Williams was only 26, an age that would have given him years more on the field had this accident not happened. An estimated 14 percent of SCIs are a direct result of a sports related injury. Considering that there is about ten thousand new SCIs a year, this is a fairly significant number.

Last year Kevin Everett with the Buffalo Bills football team was paralyzed during a game. He has since recovered his ability to move his arms and legs, but he will never play football again. His recovery from paralysis, along with Williams’, is a rare occurrence as most who experience paralysis stay paralyzed.

There are 31 pairs of nerves that spread out from the spinal cord into the arms, chest, legs and abdomen. The nerves that are in charge of upper body movement are in the upper portion of the spine, while the ones that control the legs are in the lower area. Not only are these nerves responsible for limb movement, they also control basic functions such as breathing and heart beat.

The National Center for Catastrophic Sport Injury Research has reported that in 2006 there were 16 indirect deaths and only one fatality in football, and the death was caused by a SCI. In 2007 there were eight cervical cord injuries with incomplete recoveries. Six of these were at the high school level. The majority of the SCIs occurred in games with only two happening during practice.

Considering that in 2007 there were 1,800,000 football players, these statistics aren’t painting too bleak of a picture. While each injury or fatality is a reason for concern, innovative safety gear has greatly decreased the chance of experiencing an unrecoverable injury. We have neurosurgeons such as Richard C. Schneider to thank for the decrease in permanent spine and head injuries. He helped to develop the football helmets our players currently use which have directly influenced this decrease as documented in the National Football Head and Neck Injury Register.

As researchers come up with better and more intuitive protective gear, we will continue to see these traumatic injuries decrease. In the meantime, those who have had their lives irrevocably changed from a brain or spinal cord injury deserve our continued support.

Q: What was the inspiration for the Paralympics?

A: Originally the Paralympics were created as a rehabilitation program for British war veterans who had spinal injuries. In 1948 Sir Ludwig Guttman, a neurologist at Stoke Mandeville Hospital in Aylesbury, added sports to help his patients rehabilitate.

He set it up as a competition between his hospital and others, and held it during the London Olympics. This idea was adopted by hospital after hospital throughout Britain and in 1960, Guttman brought 400 of these athletes to Rome to compete during that year’s Olympics. It was then that the name “Paralympics” was coined.

By 1968 there were more than 1,000 athletes participating from 44 countries. Today the Paralympics host elite athletes from six different disability groups. Since the beginning, they have been held in the same year as the Olympics, and often in the same city. This year they will be held in Beijing, China and the Winter Paralympics for 2012 will be in Vancouver, Canada.

Able Flight, a nonprofit organization, is giving those who can’t walk the ability to fly.

With the use of a plane adapted for disabilities, people who are paralyzed from the waist down are now able to enjoy the thrill of flight. Instead of the usual foot pedals for control of the rudder (which directs which direction the airplane’s nose is pointing), pilots use hand controls. The planes that Able Flight uses are the Sky Arrow light-weight sport planes, the only such U.S. plane that comes with a handy removable hand control for rudder control.

The training is an intensive one month program that will give the student 25 to 30 flight hours in a Light Sport Airplane. The sport certification will allow the pilot to fly, but there are certain restrictions. They can’t act as pilot in command of a craft that is carrying a passenger, property for hire, on international flights, or with visibility less than 3 miles during the day and 5 miles at night.

Able Flight was founded in 2006 by Charles Stites and provides scholarships ranging from $5,000 to $8,000 to cover the costs of flight training and room and board.

For more information on Able Flight, click here.
Image from Able Flight’s Website.

A new book detailing the life and legacy of Christopher Reeve, Somewhere In Heaven by Christopher Anderson, provides inspiration for not just spinal cord injury patients, but everyone.

Christopher Reeve, best known for his portrayal of Superman, suffered a riding accident in 1995 that left him paralyzed from the neck down. His high profile roles immediately brought the attention of the media to his situation, his recovery landmarks and eventually his conflict with George Bush over the use of embryo stem cells.

Before his death in 2004, he worked hard with researchers such as Dr. Wise Young and Henry Steifel to bring attention to the American Paralysis Association (APA), lending his famous face to the cause . With Reeve’s help, the US Senate passed a bill allowing stem cell research to go forward, potentially helping thousands of SCI patients.

Christopher Reeve left behind millions that he raised for spinal injury research and a legacy that shows just how appropriate his “Superman” role was.

For more information, visit the Paralysis Resource Center.

Close to 36,000 Canadians live with spinal cord injuries, and it’s estimated that there are 100 more every year according to The Star. Anita Kaiser is one of these individuals, but with an additional challenge. She gave birth to a daughter while paralyzed from the chest down.

Kaiser has been working to bring attention to the barriers and stereotypes that are associated with being disabled and also choosing to be a parent. Her study looks at the various aspects of raising a child with a spinal injury - everything from the physical challenges to helpful products designed for the disability.

For more information, click here.

“Spinal cord injuries don’t hold people back. They push people forward,” says Joe Levy, the coordinator for the June 22 “They Will Surf Again” event held in Long Branch, N.J.

This event, sponsored by the Life Rolls On Foundation, draws participants from the severely disabled who can no longer surf, to those who recovered from their injuries and are back out riding the waves. Levy says that the event was created not just to raise money or awareness, but to assist people with “believing in the possible.”

Articles like this one are inspiring and in our opinion, a great counterbalance to the plethora of dismal tales and depressing statistics. People like Levy, who keep a great attitude and share that perspective with others who have suffered spinal cord injuries, help create sparks of inspiration and fan determination.

They Will Surf Again is the first of its kind in the Northeast and the founders hope it won’t be the last. For more information on this event, visit this link.

To read the whole article, click here.

Image credit here.

Lloyd Millimake is ready to go home after his intensive rehabilitation utilizing, of all things, a Nintendo Wii video game system. Millimake has been at Rogue Valley Medical Center in southern Oregon for a month now, following a motorcycle accident that fractured four vertebrae and severely compressed his spine. His physical therapist chose the Wii to help with his rehabilitation because of its unique requirement of mind and body coordination. Read more here.

Chase Ford, who just turned five on March 17, will be walking in this year’s Kentucky Derby Festival Marathon/miniMarathon. What’s amazing is that Chase was paralyzed from the neck down from a spinal cord contusion he sustained less than three years ago. He is now able to walk 100 meters on his own, thanks largely to Locomotor training provided to him by the Reeve Foundation. Proceeds from the event will benefit 13 different charities. Read more here.