Running For Change

I am not a super crip

Yes, I’ve recently mentioned how I have been very quiet and there is a big ass elephant in the room that I have not called out. I need to have an honest moment and address the very possible, harmful and unintentional impact of my work over the last several years through this blog. I have tried to be mindful and I have tried to work with others who have been crafting their own message of my story. There has been something that I do not believe I have called out with readers, supporters and other folks who have disabilities. I’m not a super crip.

In Alison Kafers’ Feminist, Queer, Cripp, a super crip can be defined or understood as the following:

supercrips are those disabled figures favored in the media, products of either extremely low expectations (disability by definition means incompetence, so anything a disabled person does, no matter how mundane or banal, merits exaggerated praise) or extremely high expectations (disabled people must accomplish incredibly difficult, and therefore inspiring, tasks to be worthy of nondisabled attention)

First, to be painted as an inspiring story that solely focuses on my life with no discussion of systems and institutions truly does depoliticize my experience and cut out the dialogue on macro issues, rather, systemic oppression. Additionally, I will be frank. I am pretty sure that when I am being refered to as inspiring (by disabled and nondisabled people) that it is due to me shocking you for defeating your low expectations. Lets talk about the intersectionality of my identity and how gender, race and other aspects of my identity have impacted my access to resources and supports to overcome” my disability. . Finally, the comment of “well, if Josh can do it, than I can do it” coming from a nondisabled person really is a slap in the face. To me, that says “this person with a less desirable body can do this, so I must be able to”. If anyone wants to put in their two cents as well, reply in the comments sections. For real.

Yeah, much of why I have done this is to show children and other people with disabilities that they can do some of these things in their own way, which may fall out of parameters of ablest expectations. The deep, dark and hard to swallow reason why I have done this is to combat the internalized oppression and harmful messages that are sometimes found within those who have disabilities and by parents of children with disabilities. What messages are we sending to our children who have disabilities when we focus so heavily on cures, treatments and ways of restoring people to the way that we think they should be? We easily name a sense of feeling ashamed for having a disability, but we rarely talk about the fear of having a disability, let alone one that is slowly developing over time. Focusing on the medical model will teach our youth to live in fear for who they are, or who they are to become. What I hope for is a healthy situation where one can choose to utilize such medical intervention or not, a situation and world where they feel no other influence but only their own in the decision making process.

I sure do miss being able to see, but if someone told me tomorrow that they could give me back my vision, it would change a lot. However, it would not remove the scars, memories and stories of oppression I have felt and experienced in my life. It will not cure or treat the looks of disgust I have received in public, it will not address the issues of colleagues not engaging me ever in a meeting, but rather speaking to my colleagues, even though I am the point person on a project and it will not break down the ablest values, notions and history of systemic oppression that has supported the silencing, genocide nor marginalization of people with disabilities.

Some people are not going to like this and are probably going to unfriend me on facebook, reach out to me a little less or who knows what. All of this is my opinion and are my thoughts. I am an expert on myself and that is about it. All I ask is for us to ask ourselves the deep, scary and hard questions that have come up in this post. Find your own true answers and start to question the messages, as well as the ones you are sending. I know I am and I am not going to conform to this notion of easy and gentle form of disability advocacy to coddle those from the harder dialogue.

I’m going to get back into it. Readers and the media can decide if they are ready for radical dialogue. I am not going to back down.

I crossed a finish line today

It’s about damn time, I completed a race today. Sure, it was only 3.2 miles out of the 26.2 that make up the Boston Marathon, but I did. I had no idea that crossing that line would feel so good. My physical health has not been what it has in the past and this winter crippled my ability to go to the gym on a regular basis. In all honesty, I have ran no more than 10 times this year. Shut down trains, inpassable sidewalks, more early meetings and evening work events have all made it a bit more difficult to train. At least I have been eating less junk.
I connected with my dear friend and guide runner from last year, Laura, the night before the 5k race. I learned that compared to the last time when I ran in the BAA 5k, the racing pen grew from 4,500 to approximately 10,000. There is no doubt that this growth has come from the bombings in 2013 and that people are looking to be supportive of those impacted by what had happened. Laura and I spoke about the challenges of being a guide and a VI runner in such a massive crowd on such a short course. After some debating and her insisting we just go slow, I jumped on board and also decided to push forward. Part of me was hoping that we would agree to find anothe race to do together. My sessions at the gym have been extremely poor and my endurance has seemed to crumble after two miles or so on the tredmil. This morning, we pulled off the 5k in approximately 32:00. We only stopped or slowed down when we were in extremely tight pockets of runners and walkers. Although I am not in great shape, I felt something today that has always gotten me through running. What I felt today was the heart and determination that got me to the 17th mile in the extremely hot 90 degrees of 2012 and mile 20 of 2013, when my training had been poor due to injury and illness and my two longest runs had been 13 and 15 miles. Today is something that I did not feel last winter and is why I could not make it through to the 2014 marathon, to travel the last 6.2 miles of the Boston Marathon course that wait for me. I had a fight in me this morning.
Running and feeling the instinct to push harder felt right. Sadly, with over 10,000 runners, it was hard to push for a personal goal. Also, there were hundreds of walkers and this made it very difficult to keep up a fast pace. An additional complication was that many, many people were wearing headphones. These are not allowed for good reason. You can not hear important announcements, such as ambulances or VI runners and their guides asking you to be mindful and move out of their way. The number of people who wore headphones, from walkers to runners, was alarming. It also flat out pissed us off. The rule is not there to be antifun, it is to ensure safety.
Either way, crossing that finish line felt great and Laura did an amazing job with navigating such a difficult crowd. Today was good.

I still haven’t stopped

Damn, it’s been a while.

To be honest, it felt really good to take a break from this. Not just mentally, but also physically. However, I have managed to gain about 10 or 12 pounds. In the grand scheme of things, that is not so much. In the life of a runner, that is a lot of weight. In a way, it was good for me to relax and take a step back from the life style of running and fitness. It has made me appreciate how far I have come and what I have accomplished. I went from working out 4 or 5 days a week to perhaps 1 or 2. Although my strength and endurance went down due to this, I have jumped back on the routine over the last 2 weeks and am starting to feel myself break thorugh this wall of feeling weak. If you do not use it, you really do lose it. It is all there, it is just covered by a little dust.

First, I got back into running and doing cardio. I was quite humbled when I realized that I needed to start out at running a maximum of 2 miles. In order to avoid injury, after such a long period of rarely working out, you must start back at square uno. As frustrating as this is, it reminds me of how it felt 4 years ago when I first started running; out of shape, but making progress and feeling determined. Feeling determined is what I was missing 6 months ago, as I just had a lot going on personally. It was depression.

I started back up with lifting weights a few days ago and just had my second shot at pumping iron today. I have probably had to cut back on 30% of the weight I was lifting up until September, when I last lifted. I could only fit in so many reps in each set and know I have a lot of ground to gain back. After a couple weeks of lifting and reminding these muscles of what they can do, I will be right back at my previous level.

Some times, less is more. I will not be running in the 2015 Boston marathon. Instead, I will be signing up for the 5k road race which takes place the day before the marathon. Additionally, it is located right at the finish line, so you still take in the special experience and vibe that is there. We all know I am a little rediculous, so I have obviously set myself a serious goal for this 5k race. Once I get back into the groove of things, I’ll be eating 8 mile runs for breakfast. My focus with the 5k is to seriously improve my time. I am going to train for a 19 minute 5k. That will be about 6:15 or so a mile. The Boston Blind Runner will be nothing but a blur. Go figure.

Well, here’s to being back in the game, kicking my own ass and running so hard and fast that I will probably puke.

I still haven’t stopped.

Next steps: low-hanging fruit

It was nice to take a break from my blog and not only physically, rest, but mentally rest as well. During this time off, I reflected a lot on the direction of my blog, what I have accomplished and where my goals lay for the coming year. For some reason, I look at the Boston Marathon as being a beginning and end to a running year, don’t ask why.
My goals for the next 10 months are to go after the low-hanging fruit. People are constantly emailing me and asking me for guidance on how to serve as a guide runner, where and how people can network and how to become an active visually impaired runner. I love running in the Boston Marathon, but it is time I focus on how I can easily help people and put my energy towards something of a greater synergy. Below is a list of goals and projects I have for the coming year:

• Youtube channel: this is how people are looking up information today. After Google, youtube is the most popular search engine. This will also help reach younger generations of people with disabilities; we all want instant gratification and information 
• Write a FAQ/manual on how to be a guide runner: I will compile a list of techniques and descriptions on how to serve as a guide runner. There are numerous methods used by people all over the world and I am going to try to provide as much information on how to serve as a casual running guide and road race guide for those who are interested.
• Developing a video on how to be a guide runner: I would like to make a video on what my preference is for a guide runner and how we communicate.
• An epic video and montage with incredible music: My amazingly talented cousin, Shelly, wrote and recorded a song based on my blog and I want to use this music to create a video which captures my story, mission and features footage of me training. Again, people are all over videos these days and this will greatly help with my outreach

Although this list is short, each of these objectives will take a great amount of time. Additionally, my goal is to become more involved with local 5k races and half-marathons. Boston is still a huge focus for me, but my work needs to go in a different direction. Furthermore, I would like to become more engaging with local efforts around fund raising for charities that are near and dear to my heart. For instance, a young woman I recently met is participating in a fund raising event for Dana-Farber and will be riding a bike over 150 miles in the Pan-Mass Challenge from August 2nd to August 3rd. Her name is Talia and after she had registerd for this event, her uncle was diagnosed with lung cancer. Apparently it has spread a bit and as soon as I learned of this, my heart sank as this story truly hits home for me. She is working hard towards meeting a goal of $5,000 and I highly encourage anyone to skip on a few coffees and throw a few dollars her way. These donations go directly towards the incredible research and work Dana-Farber is doing on cancer and their abilities are priceless. Here is a link to her page for donations and profile:

On July 13th, I will be participating in AccessportAmerica’s annual fundraising bash, the Mayors Cup Regatta. This event takes place on the Charles River in Boston and provides over 36 teams with an opportunity to raise funds for AccessportAMerica and take their claim in a little friendly rowing competition along the river. Each boat is fitted with adaptive gear for people with disabilities and can hold up to 8 rowers with one person serving as the… leader? I am not too familiar with the lingo of this sport. However, it is an incredible day filled with food, music, fund raisers and most importantly, change. Families who have been touched by AccessportAmerica come out to support and many young people and children with disabilities are also present to observe and watch the numerous amateurs paddle their way along the river. This is an intense workout and I sat in two boats last year. I will be rowing in two boats this year and possibly a few more. You can bet I have been working out my core, chest and arms for this day. I know it is all for fun, but I am just a smidgen competitive. Last year, I was made an honorary member of the class of 73 and sat in on a boat that was short one rower. They have requested that I row with them once again.
That is it for now, but keep checking in to check out the new updates and eventually, my new youtube channel. I am going to post so many silly videos on that thing; you have no idea.

I am 28-years-old and still get bullied

It has been quite a while since my last post. Just the other night, I was feeling that it was time to update folks andget back to the next steps for the Boston Blind Runner. As I was walking home from work today, I had a brief interaction and experience which quickly pushed aside my general updates for the next topic of my blog.
As I was standing at a very popular intersection of Boylston street, right near the Prudential Center and was waiting to cross the street, a car suddenly stopped at the painted cross walk and the driver then chose to verbaly attack me. “What? Are you f***ing blind? Why don’t you open your f***ing eyes?”. As soon as he was done saying what he had to say, he pulled through the intersection and headed off down the street. I was very taken back and filled with anger. My jaw became very tight, I was balling my fists and was feeling drawn towards the car. I was on the edge of reacting with a verbal attack, slamming my cane against his car or asking the man to step out of the car to say such a thing to me. However, I kept my cool and knew that reacting with the same hostility he had placed on me would not achieve anything. Sadly, after he drove away none of the people standing next to me validated the situation in any way, shape or form. No one asked if I was alright nor did anyone confirm that this guy was a true jerk-face.
As I continued on my walk to the train, I reminded myself of all of the wonderful people I have in my life, how many good out number the bad and that something horrific has told this man that this behavior is acceptable and necessary for him to display. I do not excuse him, but I feel sad that he feels as though he must take something away from another person to perhaps gain back what has been taken away from him. I have had many experiences with ignorant and hurtful comments, questions and statements. On the other hand, hostil and aggressive acts are less often but are always extremely startling. I do not dismiss what has happened to me, but am strongly reflecting on the hostil acts my friends from other minority groups encounter on a much more frequent and even deadly level. Today reminded me of how to react in some situations and that we all still have so much work to do. As always…
I am 28-years-old and still get bullied. It is true. I was also bullied when I was a kid; before and after my diagnosis of having a disability and choroideremia. I can recall a time in 8th grade when another kid down the street from where I grew up once told me on the bus that I was gay and was going to die a virgin. I was also taken back many times in situations like that one. I was so baffled by that random act of aggression. The aggressor on the bus was of a very small stature back then and probably still is now. I believe he had little man syndrome. As time went on, I also learned his father was not so gentle with his family.
I will not punch everyone, but I will question everyone. The fact that this sad man chose to act like this with no room for questioning leaves me hanging. I will certainly question the next person and I will not meet their aggression and hostility with my own. I always have, and always meet it with drive, determination and humanity.
“It gets better”. Well, does it really? I think it does, but let’s not teach our youth that it stops. Your friends, family, loved ones and resources can get better, and so can your own abilities. For right now, it does not go away. Let’s keep working at it, though.

If you want to run forever, some times you can not run today – I will not be running in the 2014 marathon

Life is funny. Hardly anything seems to go as predicted or hoped for. On the other hand, if it has, then perhaps you have not taken too many risks. Me, I love risks and adventure. This journey of marathon has certainly been an adventure filled with risks. As I have learned in 2012 and 2013, you can plan for what you believe will happen but will then be faced with elements you had never imagined. The brutal heat of 2012 struck me down and then the terrible bombing of 2013 redefined what I take for granted in life. Well, the 2014 year has introduced me to an element of challenge that I would have never predicted would stand in the way of me and finally cross the finish line at the Boston marathon. That element is myself. Continue reading

Do not grab me

I remind myself every day that people have good intentions. Sure, they may do or say something that is ignorant, but they do have good intentions. This does not allow for me to feel that what they have said or done is acceptable, but it simply helps me understand and be empathetic. More often than not, I find myself working very hard to practice this when people are trying to be of assistance, but are actually being insensitive and honestly unawaringly insulting.
Continue reading

This has been the longest prelude, ever

I have been working my way through another slight set back this year. In late January, I slightly twisted my left ankle during a run with my guide for the marathon this year. It was not a terrible twist, but the issue is that it was the ankle and leg I have had injuries with over the last 2 years. Because of this, this slight twist had a strong impact on my ability to run. Fortunately, I have been seeing a physical therapist and I am back in running shape. I am in a bit of a time crunch, but with a solid 7 weeks left to run, I feel confident that this is plenty of time to fit in some good long runs and be prepared for the marathon this year. Well, it is enough time for an amature runner to be able to train to the extent that they know they will be able to cross the finish line of a marathon. That’s good enough. Continue reading

I am kind of like Bruce Willis

For as long as I can remember, I have narrowly escaped numerous situations where I should have suffered grave injuries. For some reason, I have not been as hurt as one would have expected. On one hand, many of these situations have possibly been due to my constant need to adapt to the loss of vision and not meeting these new demands as well as I should. On the other hand, I believe I am also simply a goof. Regardless, the combination of these two qualities makes for some dicey, yet interesting experiences. Continue reading

Bleeding nipples, raw thighs and tares… oh my.

Like I have stated before, I would have stopped doing this a long time ago if I was only doing it for myself. Marathon training is demanding and exhausting on a physical and mental level. Many people have asked me what I believe is the most challenging part about doing all of this. Many things are challenging, but I would say that the tole all of this takes on my body is one of the most exhausting pieces to this journey.
Until I lose enough fat off my thighs, I typically develop a rash from engaging in long runs. When I start focusing on a marathon, some of the first few long runs result in a raw rash on my thighs. Continue reading