The More You Know

A few weeks back I joined in on a Twitter conversation. It was kind of amazing to be [virtually] surrounded by some of the most educated and aware leaders in the disability community to discuss being a disabled parent (mostly), but also parenting children with disabilities, advocating for minority groups, amongst other topics. I was mainly a spectator in the conversation- trying to follow and gather information to further educate myself on later. And I absorbed a lot.

When the event was over, after just a short hour, I was left understanding the phrase The More You Know.

Just being involved with the conversation gave me so much information, I thought I would pass on some of the most interesting links that I picked up and let you achieve the same feeling I did. Being an advocate is not just about teaching others, but about continually learning and being open to truth. For me, the truth is I am not disabled. I will never be my daughter. I want to learn what I can and gift myself the best friends and mentors I can to help lift me up as a mother, and share in the parenting of both of my girls. I want to embrace disability for what it is- not because I think Addie can’t do something, but because I know she can. Me having the knowledge and thus the tools to help her navigate the system, her daily life and the world is invaluable to me. So, there it is. The more you know.

I want to start out with the most appalling thing happening to parents in this country… Did you know that families with one or both parents who have a disability are getting their children taken away? Often, the resources to help parents care for their children completely are not being utilized and, instead, children are getting lost in the system. Families are being broken. The system, not the disabled need to be changed. Read THIS.

(4) 37 of the 50 states have promulgated child welfare statutes codifying parental disability as a separate and distinct basis upon which the state may seize and detain children and terminate parental rights; and child custody laws, using the best interest of the child standard, regularly deny parents’ custody of a child on the basis of parental disability, with little or no evidence of a nexus between disability and detriment to the child;

THIS Massachusetts mother got her child back, after she was taken from her in the hospital and the state refused to give the grandparents rights. After 2 years. This happened in 2013- the child returned in 2015.

And THIS man lost a custody battle in which no one said a word, but a judge handed down stipulations negating his parental rights. This happened in 2014.

Mr. Roberts was a highly sought-after teacher in the arts where he has taught over 2,000 children from preschool through 12th grade in the NYC area. Instead of needing judicial rescue, Mr. Roberts children were both well cared-for, gifted, living in Park Slope attending private pre-school a lifestyle provided for by their blind father. Nonetheless, the judge ordered “family intervention” sending social services to the home they found nothing and ordered all of the childrens time with their father be “supervised” by a sighted nanny. Had Mr. Roberts been unable to pay for a sighted nanny he would have been unable to see his children the children he had been raising at all.

In the United States we are claiming freedom, where others get no rights because they are different.

Advocate for change.

 THIS KID is going places. One of my favorite things about the LPA National Conferences have been talking to Brandon’s mom, Syliva- she lights up when she discusses his business savvy ways, how he advocates for himself and his physical needs without victimization, and how he’s incredibly outgoing- yet humble.

“Don’t let other people- even a doctor- dictate the experience you’re going to have. Take the advice you need, then have the courage to innovate your own solution.” ~Brandon Farbstein.

 Lots of times kids need specific books for their own learning- like when a sibling is arriving, or during potty training, or going to school. In this case, a disabled parent. While I think THIS is great for kids who live a life with a wheelchair-bound parent, I think it is a great book for educating about other situations. Teaching diversity at a young age.

Lima Foxtrot is a program that was discussed and I had to delve deeper. This all-encompassing program is for injured military.

Lima Foxtrot is the brand name adopted by Lakeshore to describe what has become one of this country’s premier, comprehensive, year round, sport, fitness, and recreation programs for severely injured members of our Armed Forces who were injured post 9/11. Initiated in 2006 in response to the significant numbers of injuries from conflicts in Iraq and Afghanistan, Lima Foxtrot has served over 1,800 injured servicemen and women and their families, from 46 states and territories. Through Lima Foxtrot these young men and women use lessons from sport and recreation to learn how to pursue life after injury.

I encourage you to find out more, and learn about the people in your community who have served. Are there programs you can help them connect with? Volunteer opportunities? Lima Foxtrot is incredibly unique, but there are many programs out there for our military, and we all need to be resources to our men and women coming home.

Religious laws… I just don’t get IT. <– These are issues you need to know about. We cannot separate Church and State only when we want. We cannot let our beliefs dictate others. You can govern yourself by your beliefs, but not others.

I don’t know much about this book, except what I could read on the first few pages from Amazon, but I am going to order it just so I know more. I had a discussion with a friend who just became a birth doula about specializing in births where mother/child has a disability… and it was the first time I, myself, thought that was something I wanted to do. I love to advocate for an informed birth- and give the power back to the mother- whatever that means for her… but to assist women in finding their voice during a time that is so precious and unique? That is something I would feel honored to do. I will certainly write about the book as soon as I read it, but I encourage you to read it as well- or offer it as reading material to help educate others on pregnancy for everyone.

Lastly… I read THIS piece by my friend Carla a while back, and it made me reflect. As I’ve stated before, most of our days are not about dwarfism or disability or pain… but some days are, and it is during those days, the hustle and bustle, that I like to take bedtime as the moment to reflect and divert. I think this piece does a wonderful job and opening up the conversation we all need to be having with our kids. The ability to reflect inward and think outward is huge. The ability to empathize and share emotion. These questions help kids imagine a different place, space or time, and on those hard days, they’ve helped Addie recall what she loved most about the past 12 hours and what she hopes for the next day- which always leave me in awe of her ability to see to the future and find a brighter moment.

Now that you know, let’s all be the change.