parenting project

female speaker: it is awonderful thing to have the privilege of introducingthis next topic of discussion, which is theintroduction of the toolkit that emanates from our"rocking the cradle" report. i was very privilegedin 2012 to be one of the members of the team that wasable to participate in the research and editingof this report. it was done primarily byrobyn powell, whose entrance i am expecting with batedbreath, and imminently.

it is a lengthy tome, as youknow, for all of the right reasons. it addresses issues,including child welfare and custody, includingadoption both domestic and international, andreproductive rights, all of those issues that are takenfor granted among people who do not have disabilities,and as you have heard this morning are things that weare really still fighting for in able to ensurethat parents with the

disabilities are treatedequally with all others. i am a proud parent witha disability, and i think, from listening to the wordswe've heard today, there are two messages that arereally emerging as themes in addition with thatflexibility we have all experienced in, and that isthis: that a parent with a disability is justthat, a parent. and every single one of usare equally ill-equipped when we are firstconfronting those incredible

bundles of joy thatcome into our life. and so that we, like everyother parent, have to go through that lifetimeexperience of learning and growing, and it isindividual to us whether or not we have disabilities. and we share many, many ofthose same joys, the wonder, the concern, and yes,sometimes the frustration and challenges that goalong with parenting. and so i give a shout-outto every person who is

listening to us today who isa parent with a disability, as to all parents,because this is really the fundamental part, the fabricof our nation, and the value of our family life. so i was counselled morethan 30 years ago not to have children. i was told by verywell-meaning professionals that i could not handle itas a blind american, and that i should not undertakethis very big decision.

well, 30 years later, i havethree children ages 22-30. two of them are lookingforward to marriages in the next 18 months. and as overwhelming as thatis, i can tell you with certainty that i ameternally grateful that i had the response to the word"no" 30 years ago, which i pretty much have even tothis day when someone tells me i can't do something,and that is to say, in this america in the 21st century,we just ask how we can make

things happen, and we don'tsettle for, "no, you can't do that." (applause) thank you. so the flip side of thiscoin is equally important, and it was so eloquentlystated by our first speaker, alex reeve gibbon, when she said that the role of thechild of a parent with a disability is also somethingthat we need to consider.

so here's the same,self-evident truth: our children, born and raised byparents with disabilities, grow up to be smart,independent, compassionate, and inclusive. and isn't that the way wewant every child in this country to grow up and themost that we can possibly hope for? so if you need to look anyfurther for examples, i draw your attention to the storyof our first lady, michelle

obama, who speaks sofrequently and with such grace and ease about herexperience in being a child of a parent witha disability. so here's the thing. i know i'm speaking to thechoir here, but with all of these truths that are soevident to us, then why is it that we are hearing thisshocking statistic over and over, that in 37 states,parents with disabilities may be presumedunfit to parent?

that was the genesis ofthe report, "rocking the cradle." as you know, it islengthy because it addresses in-depth many of thepersonal stories of parents with disabilities, andreally gets into the weeds in terms of what we needto do to turn this around. but four years later, weare still facing the same statistic. so to borrow a phrase frommy millennial children, it is time to distill this downand take this message viral.

and so i am so gratefulto robyn and to rachel patterson, who's going tokick it off for us today as we wait for robyn, who havemade it possible for us to issue this toolkit so thatwhen each of us leaves the room today, and everyonewho is watching around the country is finished withwhat we are discussing today, we can take this outinto the world and make sure that everybody knows thatit is time to change that statistic and ensure thatparents with disabilities

and their children areequally included in every aspect of our society. rachel? you want to takeit from here? rachel patterson:thank you so much. so, as you know i wasn'tsupposed to be up here by myself. i really, really hope robynwill get here soon, because she's the smarts,the brains. she knows everything aboutthis issue, and she was a

really, reallyfantastic partner. i learned so much from thereport she wrote in 2012, and was so glad to beable to take it into a new format. one of the reasons she'snot here yet, in addition to security and bomb threats,is because she's waiting for an accessible cab, whichjust reminds me, we have so much work to do. but today, we're hereto talk about parents.

robyn and i plannedour presentation collaboratively, and so ifshe was here, she'd go first and tell you about thestatistics: that 80 percent of parents with psychiatricor intellectual disabilities have their children removed-- or sorry, rule or rates of 80 percent. 13 percent of parents withphysical disabilities report discriminationin child welfare. she would tell you a storyof a blind missouri couple

that had their two day olddaughter taken into custody after the mother haddifficulty breastfeeding, which most mothers, as iunderstand, experience. she would tell you the storyof kaney o'neill, a veteran and quadriplegic, who hadher -- her boyfriend filed for custody. and when her son was tenweeks old -- sorry, ten days old, saying that, you know,kaney couldn't possibly serve as a mother.

i'm hoping when robyn getshere, she'll tell you even more detail. but what i wanted to talkabout was to say that these stories are exactly why thereeve foundation knew that we had to get involvedin this issue. as we heard earlier, ournamesake christopher reeve had three children, andhe wrote beautifully about their lives together, bothbefore and after his injury, including his own surpriseat how acquiring a

disability both did and didnot change his role as a parent. dana reeve, his wife,also dedicated herself to supporting families andcaregivers, and at the reeve foundation, we think that ifyou're supporting families, you should support the wholefamily to stay together whenever possible, not, youknow -- these policies and these organizations supportpeople with disabilities, and these policies and theseorganizations support their family memberswithout disabilities.

i'm a family member ofsomeone with a disability. i don't think thatreally makes any sense. i think we are -- shouldbe about supporting whole families, to like i said,to stay together, and that ensuring the rights ofparents with disabilities to stay parents is justcentral to that mission. unfortunately, as we'vediscussed all throughout today, these violations ofcivil rights against parents continue across our nation,and too often continue

unnoticed. people, maybe who don't workin the disability community or aren't in this room, areshocked to learn that these laws are still on the books,and how often this occurs. so from the foundation,our efforts here today are twofold. we want to release thistoolkit, but we are also here -- i think we knowwe're here to do something bigger.

the toolkit has the idea ofgetting information into the hands of people. we want people to beempowered, to know how disability law intersectswith family and custody law, and where it's there toprotect them, and you have -- empower them in doctors'offices and lawyers' offices, in courtrooms andclassrooms, to know what their rights are. but we also want to starta bigger conversation and

raise awareness of thisissue in a way that spurs action. so the toolkit itselfcovers the major areas where parents and prospectiveparents face barriers and discrimination: reproductivehealthcare, adoption and foster care, child welfare,family courts, and custody determinations. it describes how disabilitylaw protects people, but also the places wheredisability law falls short -- or sorry, not wheredisability law falls short,

but where stateshave fallen short. we pay special attention tonative american communities because of intersectingdiscrimination and biases that they may face, and thereally sad history of their children being removed fromtheir homes and communities. and finally, we connectpeople with their local centers for independentliving to get involved in that local advocacy that'sgoing to change laws on the state level.

but of course, i said thisis bigger than one document. this is just the first step. with this, we want morepeople to understand these egregious violations ofcivil rights that are occurring across our nation,and the need to change these laws. so to do that, we'restarting today. we're working with thenational council on disability to generate newpolicy ideas, and i loved our last panel at saying,"okay, what do we do?

is it a law? is it a regulation?" i think that's the pointwhere we are, to say, "okay, what is the thing? what's the thingwe need to do?" independent living, like ijust said, to make sure that our advocates are connectedat the state and local level to make local change. we just awarded our highestlevel grant through our

"quality of life" grantawards this cycle, to, "through the looking glass,"to specifically for adaptive baby care in the bay area,but we hope to work with them more on additionalissues and all the great work that they do. we're working with theadministration for community living, which funds theparalysis resource center, located at the reevefoundation, and funded this toolkit. we're working with aclto connect with other acl

grantees and federalpartners to promote parents' rights, and we're reallylooking forward to joining forces with new projectslike robyn powell and kara ayers' disabledparenting project. they're new on the scene,but it's very, very exciting to get to work with them. this issue hits home to us,i think, like you've heard throughout the day, andwe're really committed to working on it.

should we -- female speaker:robyn is here. rachel patterson:robyn is here. female speaker: and -- rachel patterson: great. female speaker: talk aboutgreat entrances and perfect timing. my thanks to rachelpatterson, who has come to us from thereeve foundation. the reeve foundation hasbeen instrumental in making

the issuance of this toolkitpossible, and it really feels appropriate nowthat we give this round of applause to robyn powell. she was the critical factorin the research and writing of "rocking the cradle."she has been a constant promoter. she is emeritus to thenational council on disability, nowpursuing her phd in law. let's give a big round ofapplause to robyn powell.

rachel patterson:(laughter) it's kind of amaze through eeob. female speaker: can i aska question is the toolkit available in other langue'sright now other than english? rachel patterson: notright now, but through the paralysis resource center,we do translate several of our -- most of our materials-- at least into spanish, and then into otherlanguages as requested. oh, sorry.

for those who didn't hearthe question, i guess i should repeat it. it was if the toolkit wasgoing to be available in other languages. i'll take this opportunityto also mention, here in the room, we have the toolkitprinted out in a glossy format and in braille, andonline there is a plain language version meant tobe cognitively accessible to everyone.

female speaker: while we'rewaiting for robyn, does anyone have any morequestions for rachel? i am also uniquelyill-equipped to take waving hands, so i encourage youto just give me a shout out. (laughter) rachel patterson: if wework together, i think robby bell (spelled phonetically)had a question. female speaker: do you haveanything for parents who are in prison with disabilities?

rachel patterson:that's a good question. what she asked was if we hadanything for parents who are in prison. not right now, but i thinkthat that's a good idea. female speaker: thanks. female speaker: hold on. i looked this up last night. female speaker: so let megive you just a couple more moments of background as wewait for robyn to join us.

when "rocking the cradle"was first being discussed at the ncd back in 2011, therewas a very strong feeling among the council membersthat this was kind of uncharted territory interms of national disability policy, and none of usreally could understand why, but we all felt equallyencouraged that this was something in which we couldreally have a positive impact and change in a verypositive, disruptive way, many lives around thecountry and, by implication

then, around the world. we conceived of the reportin four different sections. they went togetherin halves. the first half, that reallydiscussed child welfare and custody, and the second halfthat discussed adoption and reproductive rights. what we discovered as theresearch proceeded -- and there was a whole team,including many members of the ncd staff that are stillhere, or who have moved on,

many council members -- ithink i'm probably the only surviving council memberthat was on the original team, which just istestimony to my advanced age and the fact that the grayhairs that i sport are not entirely due to those ofthe interesting challenges i sometimes face as a parentwith three children. but it was very clear to usearly on that what we were really tapping into was anurgent and critical need to create public awareness,and bring attention to the

changes thatneeded to be made. in very, very -- a shorttime period, stories began flooding in to the ncd thatspoke to us about parents, who because of a divorcesituation, found that they unexpectedly were deniedcustody of their children, that child welfare judgeswere not educated to the accommodations that wouldmake it seem less for a parent with a disability tocontinue to care for their child, presumptions madeagainst and around the

foster care, and really mostastonishingly to me -- and i don't know why that was so,because i did confront this personally -- thepresumptions that are made in terms of a lack ofreproductive rights, and the difficulties that a parentseeking to adopt a child may so this is my way ofexplaining to you why this report exceeded 400 pages. and as important as thistoolkit is, it is the way to really open thebook on the issue.

so we have heard overand over this morning the question, "what can we do? what can we do?" well, here it is. this is what we can do. we can take this toolkit. we can make sure everysingle state has it in the appropriate offices. we can work with the federalagencies to ensure that, to

the extent possible, federaloversight encourages the recognition of parents andtheir rights when they are parents with disabilities,and the rights of children to remain withtheir families. i think that rachel, if youwant to maybe guide us a little bit, step by step,through what we can do with the toolkit when wetake it away with it. then perhaps we will eitherhave robyn with us, or we will reconvene at a latertime to hear what she's got

to say to us. thanks. rachel patterson: thanks. and i wanted to add, whenjaney was speaking, i was workingin disability here in dc in 2012, and the reportreally did change things. it was something that kindof wasn't on, you know, that issue agenda, that listpeople have in their head of what issues we needto be working on. "parents with disabilities"wasn't there, and there's

several other people whoplayed a really important role in that, but gettingan organization like the national council ondisability to come out and say, "this is important,here are all the problems we're facing, and this iswhy we have to work on it. as for the toolkit itself,it's designed to be both educating, for people whodon't know about this issue, and empowering for peoplewho are facing it in their lives right now.

you can flip exactly towhatever issue you're facing, whether it beadoption or reproductive technology or custodydetermination, and see how the law applies tothem -- applies to you. i also have the vision of,say you're -- you know, you're going through adivorce and you have a family law attorney whoprobably isn't an expert on disability law, being ableto take this and -- and it includes, you know, thereference, "okay, this is

the law you need to look at. this is how you, as alawyer, can best represent me, a personwith disability." oh, and i see robyn. rachel patterson: i'mreally, really glad that robyn is here. i was (laughter), with herpermission going to maybe read some remarks, but itwill be absolutely better for you to hear itdirectly from her.

female speaker: aspromised, robyn powell. robyn powell: did youalready introduce the toolbox? rachel patterson: yes. robyn powell: okay, soi won't mention that. rachel patterson: oh my god. how are you? robyn powell: i'm good. well, i guess this -- heregoes nothing, sorry that i'm frazzled.

thank you to the white houseand the national council on disability for holding thisimportant event, and for inviting the disabledparenting project to participate. for those of you who don'tknow us, the disabled parenting project is anonline community by and for parents and prospectiveparents with disabilities, and i encourage folks tocheck us out online at www.disabledparenting.com.

i also want to thankthe reeve foundation for developing this toolkit. the toolkit will be aninvaluable resource for the entire disability community,and we owe the reeve foundation tremendousgratitude for spearheading this event. i'd like to begin and endby sharing a brief personal story. earlier this week, i hadpublished an article on the website xojane about mydesire to someday be a

mother, and the negativereactions i encountered from doctors -- unfortunately, ibroke my own personal rule and read some of thecomments, something you should never do. many of the comments weretruly awful, and illustrate the biases people withdisabilities experience when choosing to raise families. for instance, one lovelycommentator said, "this particularly -- thisparticular woman clearly is

highly intelligent, so thereis a physical aspect to take into account, and i do notjust mean bringing the fetus to term and through activelabor, but i mean the every day grind of takingcare of an infant. if she and her partner bothhave chronic pain conditions or some type of physicaldisability, the challenges of raising a smallchild are huge. can you pay for a 24/7 nurseto do the tough physical work of childrearing?

have you spent a significantamount of time with small children, testing how yourbody does taking care of these are just real-worldquestions to think about outside of whateverdisability activist's philosophy you have." "when it comes down to it,can you feed, lift, bathe, carry, and chaseafter a child? if not, you probablyshouldn't have or adopt children in mypersonal estimation."

ignorant remarks such asthis, and the many others that were made, depict thesignificant biases we face, biases that are also oftenharbored by child welfare workers, judges, doctors,family members, lawmakers, our neighbors, et cetera. although the right to raisea family has long been recognized as one of themost fundamental rights we have in our nation, thisright has not yet been enjoyed by peoplewith disabilities.

indeed, parents withdisabilities are the only distinct community ofamericans who must struggle to retain, and at timeseven gain, custody of our children. studies have found thatparents with psychiatric and intellectual disabilities,of course, experience it the worst, with removal ratesas high as 80 percent. and parents who are deaf,blind, or have physical disabilities also experienceextremely high rates of

child removal and lossof parental rights. parents with disabilitiesare also more likely to lose custody of their childrenafter a divorce, resulting in many women withdisabilities staying in bad and sometimes dangerousmarriages out of fear they will lose their children. and of course, this is notjust about the numbers, but actual families who havebeen torn apart, or even given the -- not even giventhe chance to be formed due

to stereotypes anddiscrimination. for example, in 2012 -- imean, 2010 rather -- a blind missouri couple had theirtwo day old daughter taken into custody by the stateafter the mother had difficulty breastfeeding,something most new mothers experience. in other words, the statetook their daughter not because of abuse, but ratherjust fear that the parents would not be able tocare for their daughter.

this couple had to fight for70 -- 57 days just to get custody of their daughter,meaning they lost two months together. in 2009, kaney o'neill, aveteran and quadriplegic mother, faced an unexpectedbattle when her former boyfriend filed custody oftheir ten week old daughter, alleging that she was notfit -- not a fit and proper person to take care of herson, and that her disability greatly limited her abilityto care for the minor, or

even wake up if theminor was distressed. she endured a over a yearand a half battle before she was finally able to getcustody of her daughter. and while there was a happyending in that story, it was terrifying and horrifyingthat courts would allow someone to question aparent's ability to have custody based solelyon their disability. there are countlessstories also of people with disabilities who wereprohibited from adopting or

becoming foster parents,as well as women with disabilities who areoften denied reproductive healthcare becausephysicians deem us unfit to be parents. we must come together asa community to end this discrimination, and i'mhoping that the toolkit will be a great step forward. female speaker: do wehave questions for robyn? male speaker: howwas your morning?

robyn powell: oh. you don't want to know. female speaker: well said. anyone else? remember, you got toshout it out to us. female speaker: hi robyn. this is camilla(spelled phonetically). i'm just wondering,will there be a part 2? because i know that thereis probably additional

information and thingscoming down in regards to parents being in the reins. robyn powell: mydissertation someday. female speaker:(unintelligible) i'd be happy with that. yes. female speaker:(unintelligible) you can get married, you can have yourlife, but when it comes to children, that's(unintelligible). robyn powell: that'sa good question.

i think that the reasonis that when programs and policies were beingset up for people with disabilities, it was justnever expected that we would you know, "independentliving" meant you just, you got an apartment somewhere,maybe with a roommate, and then that was that. no one ever consideredthat we would want more. and now that we're 25 passedthe ada passing, i think that we not only want it,but we expect it, and i

think that it's timethat providers, including disability providers,catch up on that. female speaker: thankyou, rachel and robyn. we're going to make thatthe last question as we are continuing to adjust ouragenda today to be sure that we get everything that weneed to discuss out in the open. so now, we've got "rockingthe cradle," it's time to rock the nation. i want to thank both racheland robyn for their hard

work on the toolkit, andi really look forward to working with everyone inthis room and everyone who's listening, to be surethat we make sure that the changes that need to bemade are heard and are implemented aswe go forward. thank you everyone. maria? female speaker: thank youso much, janey, rachel, and robyn, and especially robyn. so as we close out i'mgoing to take a bit of emcee

privilege, andsay a few things. like many of the familiesyou've heard from today, of the people you've heard fromtoday, i come from a mixed disability family. my siblings and i have awhole host of diagnoses and identities that we own, andmy -- my brother called me last night. now, i'm an older sister. how many older -- oldestsiblings do we have in the room?

quite a few. so when you get a call fromyour youngest sibling, my immediate reactionis, "oh no. what's wrong?" right? and he was actually justcalling to see if i could send him a pictureof the president. but he asked me, "maria,what are you doing? what's going on?" and my brother hasdisabilities that impact his

ability to read, verysevere disabilities. and he's encountereda number of barriers throughout his life becauseof that, but he has a young son, and he's expecting asecond son in september. and so i said, "john henry(spelled phonetically), tomorrow we're conveningthis forum on the civil rights of parents withdisabilities." and i said, "this applies to you."and he says, "what?" and i said -- well, iexplained many of the

examples that you've heardthis morning to john henry, and even though i couldn'tsee him, i could hear his eyes get big. and he goes, "maria, thatis so messed up." he did not use that word. he used something alittle bit more colorful. "maria, that is so messedup." and that moment is not a moment that many peoplewith disabilities can have as they are beginningto build their families.

because oftentimes, weare the only ones in our families who are disabled. and so today, you've heardthat this issue of civil rights, parents withdisabilities, is much broader than the potentialmothers or fathers that are out there. it applies to family memberswho might be seeking to make sure that their loved onedoes not enter the foster care system or people whoare seeking to adopt, but we

also have to make sure thatevery single parent of a child with a disability,every single family member of someone with a disabilityunderstands their rights and responsibilities, andunderstands that as they are raising their own childrenwith disabilities, that in addition to educational andacademic success, and having a meaningful career, someonecan also have a thriving, loving family. and so one of the bigquestions i want to pose to

all of you today, is howdo we make sure that every american understands thatall americans can have families? right? so with that, i hopeyou will continue the

conversation. again, hashtag #pwdparents,and thank you all for being here, for lending yourtime, your energy, and your expertise. here's to futureconvening's on this topic.