I hate stairs   In case of a fire, use the elevator. Quickly.

Today marks my first Sunday of writing I hate stairs. God has blessed me richly. If it wasn’t for Him, I would not be where I am today. Through the work of many brothers and sisters in Christ, as well as many others, sufficient funds were raised to build me and my brother a wheelchair accessible house about seven years ago. About a year before that, funds were raised to help us replace our 1979 Ford Club Wagon with a brand new accessible van.

It can almost be overwhelming to think of all the ways in which the Lord has blessed me and my family. I don’t know why we always doubt the Lord and His promises.

28″And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

We sometimes become so worried about these needs that God knows we have need of that we miss the bigger, more important promise.

36 “Therefore let all Israel be assured of this: God has made this Jesus, whom you crucified, both Lord and Christ.”

37 When the people heard this, they were cut to the heart and said to Peter and the other apostles, “Brothers, what shall we do?”

38 Peter replied, “Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit. 39 The promise is for you and your children and for all who are far off—for all whom the Lord our God will call.”

My grandfather used to say that if it wasn’t for the second part of verse 39, he wouldn’t have a shot at heaven. “The promise is for you and your children and for all who are far off…” He said he was “far off” on three counts. First, he was not a Jew, so he was far off in ethnicity. Second, he was born in Rome, Mississippi, far off in location. And thirdly, he lived almost 2000 years since the promise was made, putting him far off in time as well.

But the promise was made. It was made.

Beginning a blog about disability has sparked an interest in what other people with disabilities are writing about. I’ve been putting together a collection in my del.icio.us bookmarks tagged “stairhaters.” Now that I have seen what all is out there, I now realize that what I thought was a unique idea is, well, not all that unique. But that’s OK. I’m looking forward to getting connected with the disability blogoshpere.

So I thought I would share with you some of the things I’ve been reading in the past few days.

The first is brokenclay.org/journal. It’s interesting, intelligent, and the mood feels right. It’s also one of the longest running blogs I’ve come across (since 2001). I enjoyed the post “Two Encounters.”

The new blog that I have been reading the most is cherylberyl, who blogs on Disaboom. Believe it or not, she has a way of venting frustrations that helps me relate to the problems she has. She has been struggling with the idea of using a power chair. It’s funny, because even though I’ve been using a power chair since age 3, I seem to relate to the experience she is having. Oh, and if you are going to hate a power chair, this is how you should do it. The posts can be long, but they’re worth it.

It seems that no matter where I happen to find myself in the disability blogosphere, I keep seeing one name. KaraSwims. Kara blogs on Disaboom and on her own personal blog. Topics on her blog vary, but she is not shy at all about discussing the way disability affects her life. She even finds herself talking about it too much.

Another interesting read is How to be an Inspiration, from Stephen Deal, a writer from the UK. I haven’t been reading it long, but from what I can tell, it is thoughtful and funny.

So this is what I’ve been doing for the past few days. Coming soon will be a feature written by my brother about a family who has seven children, one of whom has Spinal Muscular Atrophy Type 1. In addition, I may give some thoughts about some childhood experiences.

Hasta luego.

Last month, I discovered a new sport for people with disabilities. I have never really been involved in sports, other than some teeball when I was younger, and some occasional backyard football. I’ve been practicing this summer with a startup team in Jackson playing power soccer.

Power soccer is a unique sport in that it, unlike many other wheelchair sports, requires using a power chair to play. It doesn’t require upper body strength like wheelchair basketball and similar sports do. It does require the player to adequately control his wheelchair. However, players do not necessarily need to own and regularly use a power chair. If the team has an extra power chair, anyone with a disability can play, whether he normally uses a power chair or not. As long as he can control it.

You might be wondering how power soccer differs from standard soccer. I won’t get into all the specifics, but I will discuss some of the basics briefly. If you want, download the full Laws of the Game. I will be using some of the images from it.

The game is played on a standard basketball court. That works well because it’s indoors (concrete and tarmac are to be avoided), keeping players out of the elements. Here is a diagram showing the playing field.

Teams consist of four players each, excluding players “on the bench.” Although the main requirment is a power wheelchair, some other equipment is needed as well.

The footguard (shown above) is the single most important piece of additional equipment. Handling the ball is not an easy task. Like any sport, practice is essential for a team. There are some strict rules in place, so players have to know where to be, what to do, and when and how to do it. For instance, the 2-on-1 Rule.

In the image above, player A is handling the ball. Only one player from each team can be playing the ball at one time. This rule is enforced by a three-meter halo. Since player B is helping player A by blocking off the opponent while inside the halo, he is gaining an illegal advantage. It takes some quick thinking and good awareness to avoid these situations. Power soccer is a fast-paced game. Many times, the ball (and sometimes wheelchairs!) go flying out of bounds. The out-of-bounds rule is worth mentioning here.

As shown in the above image, the entire ball (from a top view) must be over the out-of-bounds line. Until it crosses that line, players can leave the playing field and position themselves to keep the ball in bounds.

Well, that’s the basics. If you want to learn more about power soccer, visit the US Power Soccer Web site and also check out this video from the Power Soccer World Cup. Also, feel free to contact me if you are interested in joining the Jackson Jammers. There is also a team in Hattisburg, MS and there may be a team starting in Starkville, MS as well. So if you are interested, let me know and I will put you in touch with someone who can make it happen.

And finally, a photo of the team—minus some new players who recently joined (click for larger image).

I’m nearing my last year of school. This time next year, I hope to be employed. The taxpayers of Mississippi and the nation have helped me with the cost of attendants and the cost of my education. I am grateful, and I am ready to get a job and put back into the system. That’s the problem though. I can’t seem to find a way off of the system.

I’m receiving insurance and healthcare benefits through Medicaid. While there is at least one Medicaid program that would allow me to earn a moderate salary, all Medicaid programs I have found out about share one financially damaging caveat. I can only have $2000 in savings (more accurately, resources, which include savings, property besides home, extra vehicles, etc.). Furthermore, I was told by a Social Security employee that Medicaid’s policies change from year to year, and I could possibly find myself suddenly uneligible. So there I would be, with only $2000 in savings and no health insurance. And if I were to get a raise or promotion, I might be put over the salary cap.

It is possible that if I had a high enough salary, I could pay my attendants out of pocket. And I may be able to get insurance through my job. The problem is that it takes about sixteen hours of attendant care per day if I were to live completely independently (as I do in college). If I stayed at home, I would need four to eight hours a day. The expenses add up. How can I pay an attendant a decent wage when I may be only making a decent wage myself?

The problem is that the same support I need to get through college, I will need when I get a job. But the programs I rely on now either cease after school or will limit my career opportunities. There’s no transition. Not being able to move forward, should I simply stay unemployed and continue living with full Medicaid benefits?

I believe the solution lies in a compromise of transition. A program by which people with disabilities can work without financial caps, giving them full access to any career opportunities. But it could also minimize the cost of benefits the state would provide. Here’s how it would work. Let’s assume I get a job and I am able to get insurance through my employer. I would have a counselor who determines how many hours of assistance I need (a counselor would also be helpful for making sure people don’t abuse the system). Then, the counselor would take my yearly (or monthly) income and run it through a formula that would result in the amount of financial assistance I would get. It would be assumed that I could personally cover the rest. That’s it. Simple.

It’s a win-win. I get to work and take advantage of any career opportunities, and the state will save money. I would be paying taxes and covering some or most of my attendant costs.

If only I could imagine this program into existance.

It’s a trick question really. Fact is, I don’t necessarily hate stairs. Being that I use a wheelchair to get around, stairs represent an obstacle which I must avoid or overcome. But I don’t necessarily hate obstacles either. When you overcome them, they make you a better person than you were before. “So what’s with this silly name then, Blake?” you might ask. As often is true, the answer lies in the question. It’s just a silly name. I’m sure we could extract some deep, significant meaning from it if we so desired, but it would have to be in the wee hours of the morning following an intense discussion of the meaning of life.

The more appropriate question would be “why did I start this blog?”

I began this memoir for two reasons. First, I did it for myself. Discussing disability issues has been an interest of mine since college, perhaps before. I enjoy sharing my closest of thoughts with my closest of friends. Though somewhat shy about discussing more personal issues with acquaintances, I found that many parents of children with neuromuscular diseases (and other disabilities) found in me and my brother something they did not always grasp from doctors.

Hope.

These parents found some small bit of comfort in their time of crisis knowing that their children could grow up, live life, and be happy. This, in part, forms the second reason for starting this blog. I believe there are people out there, whether they be parents of disabled children or the children themselves or adults with disabilities, who can relate to my experiences.

So I did it for myself. But I hope I can impart at least some small amount of knowledge and understanding to anyone who decides to join me. Even more, I hope to learn from their experiences as well.

Back to the future

“I hate stairs” (or maybe iHateStairs? ihatestairs?) is a place for me to share with you the part of my life affected by disabillity. As you can imagine, all types of issues, thoughts, an observations could fall into this category. Be prepared. They will be diverse. Some will preach opportunity. Some will vent frustrations. Some will be tangible. Some will be abstract thoughts. In anything I say, I mean no offense to anyone. Disabillity can be a touchy subject. But we can move past that and nurture discussion.

And one more thing I should probably mention: I hate stairs. :-)