Nothing About Me Without Me (And Nothing Without Me, Please)

I need advice on karate sparring safety, and access to a karateka with/familiar with disabilities. Anyone out there?

For months I have been suffering greatly, and have not had the wherewithal to deal with it.  I sustained an injury in my hand right after I began a rigorous physiotherapy regimen.  Now I am healed, and stronger than I was when I began training.  Because I am stronger, I push harder.  My limits are so dynamic from day to day that I never know when I will push myself over the edge and end up needing to stop.

When I need to stop because of my disability, it looks like this: I start losing consciousness, and immediately bow out.  I go to the corner and lie down.  I put my feet up and wait for blood to flow toward my head.  I begin rehydrating beyond what my IV fluids can offer.  In the meantime, I take inventory on any joints that might be out of place or muscles that are inflamed.  I try very hard not to draw attention to myself, and not to cry out in pain, or choke from the nausea.  Someone always checks on me, and I always appreciate it.  I did have one scare, and since then I have kept IV fluids at the ready, or actually running while I am active.  This has helped tremendously and I can push even harder than before!  It really takes failure after failure to find success.

But for my Sensei, Senpai, and fellow karateka, this can be fearsome.  I'm so used to this unpredictable life that I forget sometimes how able-bodied people may find it confusing, frightening, maybe even traumatic.  More familiar are judgements, accusations, and decisions that exclude me that I forget to be sensitive to the worries of caring people.  I have work to do.

For the first time since Day One, my last month has been emotionally crushing.  Sensei has given me alternatives when I've needed to work with my crutches, which really makes me feel like I have something special to bring to the karate world.  The ways in which Sensei has helped me adapt my moves and practices tell a great deal about his own strengths and flexibility.  If ever I had a reason to believe in a higher power, it's that people like him are in my path, and that other people have led me to seek him out.

Senpai have asked me not to do certain things, especially sparring.  It's been worded as my crutches being a distraction, or that I can't do something, or that I shouldn't do something.  I have not been given a choice, and I have not been given alternatives, without advocating for myself.  This is a normal part of my every day, so one would think it is no big deal.  But because karate is so much a part of my life, I am affected more deeply than perhaps is even healthy.  In short, it hurts!  A lot!

What to do about it?  Well, in a few instances I have simply spoken up in the immediate.  In others, I have resolved to continue my practice alone, elsewhere, and to let the hurt feelings go: the impact on my emotions is unintentional.  These people are looking out for my life and my safety, with little to no knowledge of Ehlers-Danlos Syndrome, much less, how to interact with or teach someone with multiple disabilities, the other being hearing loss.

Finally, it came to a point at which I was so fragile and sensitive about my disability, and excluded so often, that I had no patience left for myself, for my own growth as a student.  What a tragedy it would have been if I had given up, and not listened to my fellow karateka, or to my Sensei, or to my magnificent wife.

Sensei and I had not managed to connect on the phone.


In an effort to better cope, and to prepare myself more effectively, I asked some facebook friends:

"I want to make sure that when I am sparring, I have adaptations in place, or that I have plenty of alternative movements and partner exercises so I am not isolated by my disability.

"There are concerns that I will get hurt if I spar. For now the rule is that I will only work with my Sensei until we know what I can handle.

"I grew up taking beatings, and if someone attacks me on the street they aren't going to check and ask if I can handle it."

Andres: Be patient, work on your foot work, moving side ways, front and back with your guard up, it all comes down to the basics, if you know your basics well, when it comes time to spar your body should move automatic, with the muscle memory of practice. you be fine. just keep training sweety and i will tell you some more tips, ohh but the best person to ask is Sensei Tony, trust me that man really is the person who you want to talk to. te mando un abrazo mi amiga y te veo en el dojo soon.


Steve: I agree with Andres. Work the basics slowly and build muscle memory. A slow path is slower, but will ultimately yield the best fruits. You sow in the spring - but the harvest isn't until much later.
Another thought - learning to spar well takes years of training under any circumstances. But, a big part of that is learning how to use your body and move in effective ways. Your awareness of your own body and the care you already put into your movements may prove to be an advantage for you that others lack.


Ernie: ABCs of Self Defense - A=Avoid B=Boundary Set C=Combat. I do not need my physical therapy degree to advise you not to spar. In life & death, learn to use muchimi & do not fear closeness to your attacker whose eyes and throat are not protected by  muscular armor. Practice relaxation, improving speed & specific focus on targets > overcome superior strength with speed. Don't go where the bad boys go and continue to be the awesome person you are and lastly pray for protection .......... and all will be well with you and your soul.

Practice relaxing, speed, specific targetting to the eyes and throat & prayer for protection. Don't go where the bad boys go, stay alert and continue to be the awesome lady you are = No Worries.
Bottom Line - Honestly, sparring will give you a false sense of security. Most martial artists are not very honest in this regard. Unless you practice under the influence of adrenaline, all your MA skills will be uselessly slow when the real fight comes. Feel secure in your faith.
Use knees, elbows, fingers and palms.....forget feet & fists. Practice crushing & spearing
Lastly, like Krav Maga, defend and attack simultaneously and don't make this effort a study of, or a waiting until, you understand "what you can handle" ... Make it a study of what you are capable of dishing out & expanding that capability. Your limitations are not fixed, they only appear so. Rather than have a comparative value system, what can you do vs. others, have an absolute value system of what can I DO (period). Do not allow your disability to be your focus....as it seems to be. God's favor & wisdom on you girl.

After this conversation on Facebook with generous and loving friends I reflected carefully: where can I go from here? My physiotherapist said to me, when I reached an exercise that was extremely painful, "We need to keep moving forward; we aren't going all the way back, and we aren't staying here." I haven't yet decided what I will make of this advice, but I wanted to write it in my blog so that I may come back to it a hundred million times. It's all brilliant and full of love. Right now, I really need it. UPDATE Since I wrote this draft Sensei explained that everyone is very concerned that I will get hurt, or worse. He said it would be a big loss and nobody would get over it very easily, if at all. He said it in a way that didn't sound like he was talking about liability. Indeed, he has already got plenty of reason not to teach me at all on that front. But rather, he said it in sick a way that it meant I mattered, that I made a difference somehow, and that I have become a part of the family. The agreement we came to was that I would order my equipment and spar only under Sensei's close watch. He would modify anything he felt should be modified for my safety, and he would give me alternatives when he felt they were appropriate. This is a dream come true for a person with a disability of any kind: the chance to pursue a dream with reasonable accommodations in place that make the activity equal parts safe, challenging and possible. I love my dojo. Now I feel they are truly living the full inclusion model. That means I have much work and learning to do; I have worked hard advocating for this and now it's time to show my chops.