Part two – Creating Culture: Choosing to Be An Emotionally Present Parent

Click Here to read Part One

Stressed Parent.jpgAdmittedly, the past few years since becoming a parent have been very stressful. From not knowing why both my children did not meet key developmental milestones (and the initial helplessness and hopelessness that came with that) to not know how to help them.  Because I trust in the guidance of my chi, my question never rests at “Why me?” and quickly moves to “Who else is going through this?” And to my surprise, there are so many families struggling in isolation in what can be a daunting journey to coming to terms with a child’s developmental disability.

In Igbo culture, if a child looks “typically developing” then the only problem with him/her is likely being possessed by an evil spirit, or obanje, that must be prayed on or “disciplined” away. Because children are to be seen and not heard; the grunts, seemingly uncontrollable hyperactivity or temper tantrums are inexcusable offenses that must be corrected by not sparing the rod, so to speak.  It’s difficult to convince people that are deeply rooted in a specific understanding around childhood behaviors that what’s happening with your child requires medical attention.

System of Care

System of Care

And in this uphill battle to convince the “village”, there are other dysfunctions in the system of care. In my experience, the difference between the Nurse Practitioner (NP) that identified my first son and the Medical Doctor (MD) that wrote my second son’s referral was engagement and support. The NP went above and beyond to make sure that I was supported in my process; and even as I switched to a pediatrician as our primary care provider due to the false thought that this would offer more “professional” support for long term health care needs, she talked me through the pros and cons. I am eternally grateful to the NP that helped identify a provider agency that assigned a caseworker that stayed with my family until my son’s 3rd birthday, when suddenly it all went away.  There is so much to say on that transition from Part C to Part B of the IDEA and the role of the medical community to make sure that there aren’t lapse in services, no matter what’s happening within the education system, and I will take time to say it and organize even better than that. But for now, I’ll just say that  look forward to more opportunities to engage the medical community and help them understand the difference in care it makes to have an emotionally present healthcare professional.

I have also come to discover that a lack of appropriate support has been detrimental to my own health and well being; and that these high levels of stress have a damaging impact on my children. So, while pressure makes diamonds, apparently it is not so great for brain development. With so many children being born with a variety of sensory processing, impulse/emotional regulation and communication disorders, conditions typically associated with Autism, or other conditions like ADHD that impact the 9 functions of the prefrontal cortex , it appears that, as  a whole, the healthcare community in Washington, DC that work in direct service to our children tend to not take seriously the need for early and substantial intervention.

Gabor Mate mem

Dr. Gabor Mate, M.D.

One of my favorite authors and public intellectuals, Gabor Mate, says that what helps children the most through these developmental challenges is emotional closeness with non-stressed, emotionally available adults.  The absence of these sorts of people in a child’s a life contributes to why the child is not connecting the necessary brain circuit development that promote positive social relationships and good health. To this end, environment (i.e. school, home, recreational program) is a crucial component to positive brain development, starting in pregnancy and then through the first few years of early childhood  development.

According to “Excessive Stress Disrupts the Architecture of the Developing Brain,”, a position paper published by the National Scientific Council on the Developing Child from Harvard University’s Center on the Developing Child, it identifies three types of stress:

  • Positive stress: is triggered by meeting new people, dealing with frustration, entering a new environment.
  • Tolerable stress: responses that have the potential to negatively affect the architecture in the developing brain, such as conditions like death or serious illness of a loved one, a frightening accident, parental separation, persistent discrimination or other serious life events.
  • Toxic stress:  the strong, frequent, or prolonged activation of the body’s stress management system, causing chronic, uncontrollable, and/or experienced without access to support from someone caring.  This can have adverse effects on the brain architecture and can be caused by chronic abuse, directly and indirectly experienced by the child.

The impact of stress on the parenting environment, resulting in limited support for the parents, starts with pregnant women.  Epigentics shows that genes are turned on and off based on environmental factors, thus genetic arguments do not explain the rising rates of children with a variety of Autism spectrum disorders and other developmental disabilities.  The Harvard study also shows that significant maternal stress during pregnancy and poor maternal care during infancy, which have little to do with genetic composition, both affect the developing stress systems in young animals and alter genes that are involved in brain development.  The conclusion of this study notes that relationships children have with their caregivers play critical roles in regulating stress hormone production during early years of life.  The study notes, specifically, that children who grow up in conditions of economic hardship often exhibit elevated stress hormone levels.

The significance of Georgetown’s CoP is that we address the the cultural dimensions that inform this form of isolation that are faced by many oppressed people, including individuals with disabilities and the families who care for them.  Together as a community of those in dedicated service to our families, and in community with many other cities throughout the United States, we are taking on the positive stress to transform systems to eliminate the toxic stresses that are literally altering the architecture of brain development in our children. Being a part of Georgetown’s CoP and through other efforts with our Coalition and through the network of parent-supported organizations, these offer positive outlets to explore ways to support my family and in support of other families struggling to find a balance and reduce stress for the benefit of our children.

And, because I didn’t grow up with a cultural awareness that readily prepares me to prioritize managing my stress levels in order to show up as a better, emotionally present parent for my children, I choose to adopt a new culture.

 

In solidarity,

Chioma

Part One – Creating Culture: Choosing to Be An Emotionally Present Parent

what is cultureLast week, I had the pleasure of participating in the 2017 Transformational Leadership Forum hosted by the Georgetown University National Center for Cultural Competency (NCCC). I was not only honored to have had the opportunity to learn from highly skilled cultural competency trainers, but the icing on the cake has been to now be invited to participate in DC team’s Community of Practice on Cultural and Linguistic Competence in Developmental Disabilities (CoP), led by partners in the DC Department on Disability Services and involves other collaborators within DC government and in non-governmental agencies.  There was so much useful content presented in this two-day forum and I left in deep reflection about what aspects of my culture inform my parenting style as well as my approach to disabilities advocacy. 

CoP

Taos Drum

Drums are considered the  heart beat of mother earth and used in ceremonies and celebrations in many Native American cultures

The forum began with us sharing our culture. And without setting any parameters as to what constitutes “culture”, it offered us an opportunity to share a vast array of things that we identified as self-representative. I chose to present a Taos hand drum, gifted to me during my two-year sojourn to Santa Fe, New Mexico. While I am proudly West African (Igbo, to be specific), I have always felt a connection to indigenous cultures in the Americas and have been fascinated by the similarities in values and ceremonies with indigenous Africans. One shared value that I cherish  is the importance of birthing and naming ceremonies, of which drumming is a big part of these forms of celebration. In the case of Igbo culture, naming a child is of the most important actions taken in early life. One earns their names eight (8) days after birth, and there are many participating elders that help new parents with this aspect of tradition through prayer, libations and, of course, music.   

African Talking Drum

The talking drum is used for communication and is used by many West African cultures to send important messages 

The Igbo believe that each person is born with a chi, or god-self, and to honor this chi, the child is studied by an elder while in the womb. At birth, the names are revealed with the first name embodying the essence of his or her chi, which is lifelong guardian angel-like energy.  While there are variations of the naming ceremony within in Igbo culture and acorss different African ethnic groups, in my case I was named Chioma (which means “fortunate”) by my grandfather. By the traditions offered by the ancient Igbo, my chi having oma or goodness, would suggest that my life’s path is paved with chance encounters and opportunities that are commonly associated with “luck”. And truly, I have been lucky in ways that have surprised me. With  every misfortune faced, I have been witness to the many blessings that seem to come at the strangest, most needed times. This sort of chance luck is what took me to New Mexico in the first place (a story for another day) and continues on even now, as I work with other families and concerned community members to build the Inclusive Prosperity Coalition.

While it’s not been an easy year in efforts to build our Coalition and win active participation from our families, whose hands are already so full with organizing care and support for our children. Nonetheless, we have bore witness to two great victories in terms of improving DC Child Find the short time of our existence: 1) the ruling in the D.L. v. District of Columbia case, championed by a great and capable legal team of Terris, Pravlik & Millian, LLP that are affiliated with our coalition; and 2) The Committee on Education of DC City Council, chaired by Councilmember David Grosso, who recently released a letter to Chancellor of DC Public Schools Antwan Wilson inquiring around the potential detrimental changes that Early Stages, a key agency responsible for identifying children with developmental disabilities and delays in the District of Columbia.

Besides the belief that we as a Coalition will be victorious, given what I already know about my chi, I am also greatly motivated by the love of the children. With consideration that my primary responsibility is to my own children, I am also in reflection on how to reduce my stress levels so I can better provide the emotional support in these early and formative years of life. Culturally speaking, my family and the many other Igbo families I grew up with, operate with the philosophy that children should be seen and not heard.  The age-grade system that we practice tends to limit access and power in the family and community based on age.

Having non-typically developing children with delayed speech development, sensory processing issues that result in mal-adaptive behaviors, I am constantly judged as a parent for not controlling my children.  And while I’m strong enough in character and grounded enough in another revered cultural value of nneka, (which means “mother is supreme”), I use all leverage as holding the revered title of mother, or nne, to shut down these sorts of attacks. However, I am less successful in creating a support system of emotionally available caretakers for my children in the times I have to be out of the home at work and in the community supporting other families.  It’s a hard balance to achieve and isolation is a real threat to achieving quality of life for many children with disabilities and their families, mine is no exception.

Part two of this blog post will look at the research I’ve discovered that supports the need for greater attention to getting the tools to reduce stress as a parent and to develop a support system of other non-stressed and emotionally present caretakers.


Caretaker in Maleness: The Economy of Male Teachers and Healthcare Professionals

MCASLast week, I was invited to speak with the Male Caregivers  Advocacy Support Group, an initiative of Health Services for Children with Special Needs (HSCSN).  It was truly an honor and pleasure to be surrounded with black men that are committed to being strong support for their loved ones with disabilities.  It brought tears to my eyes because, personally, I struggle with providing male support for my boys. And while I harbor some guilt due to the breakdown of my union with their father and, at the same time, am frustrated with the fact that he lives out-of-state; I am solution-oriented and determined to find other ways to accommodate for the many signs that having healthy male presence is in the best interest of their growth and development.  So, once I got to call from HSCSN to address an audience of male caregivers, I enthusiastically accepted the invitation.

This invitation also came shortly after I read a recent article in USA TODAY entitled, “Male teacher shortage affects boys who need role models”. The piece notes that, “A male role model figure is a key person in many of…boys’ lives, especially if this person is someone who listens, who’s a giving person and patient…[a]nd there may be boys who might be afraid to ask questions to a female figure or may be more comfortable with specific questions geared for men.” While as a mother, I work very hard to be present for my sons – especially because they have developmental disabilities – it is not easy holding masculine and feminine positions in their home lives. So, in reading this I felt both gratitude and guilt that a such deeply private and personal subject matter has surfaced to peak the interests of popular dialogue. Yet, if I am to be honest of my observations of my own sons and how differently they act when encountered with men versus women, my guilt is tempered by my gratitude that these inner thoughts are being aired out so I can more thoroughly confront and unpack the emotional layers of this truth. I can’t speak for everyone’s child(ren) about the impact of an interaction with an energetic and engaged man but from my observations of my sons, encounters of this nature are undeniably powerful and positive.

Male Teachers

Image taken from the USA TODAY article that notes that, “According to the Consortium for Policy Research in Education, only about 24 percent of all teachers in 2012 were male, with just one in 10 men teaching elementary school students.”

The guilt I feel mostly comes from having a failed union and also not being very successful at co-parenting. There is also another layer of this guilt caused by societal pressures felt from the fascination in popular media of the marital status of African American women – to the point where our procreation and singleness is always being monitored by laymen and social scientists alike. Mind you, I am also sort of gender-bender and don’t promote identification with any one gender – especially as such definitions are defined within the context of Eurocentric patriarchy.  Furthermore, as a social scientist in my own right, the concepts of “maleness” and “femaleness” have fascinated me so deeply that I dedicated my dissertation research to investigating how cultural values from precolonial African matriarchal systems offer possible solutions to the devastated political economy in war-torn regions such as the town of Goma, known as “the rape capital of the world”, located in the eastern region of the Democratic Republic of Congo. Yet despite my personal position on gender, or even my aspirations to restore matri-focal values to guide a redistribution of wealth and restore of economically devastated communities through gender equity, at the heart of it all, I am a single mother raising two boys with mal-adaptive behaviors that seem to flare up more in the presence of women than they do with men caregivers. This is a fact I cannot deny and must estimate fairly when I think of what’s in the best interest of my children’s development.

The USA TODAY article also references a federally funded initiative at the University of Notre Dame called TRiO, whose director, Ethan Zagore, attributes the shortage of male teachers to both conscious and subconscious gender bias of the role of an elementary school teacher as better suited for women.  Similarly, the health care related professions, such as nursing, are also noted as a female-dominated field. And for many medically fragile children with disabilities, healthcare professionals are as prominent in their lives as educators.  So, if education and healthcare professions are female dominated, what impact does this have on delivery of care?

Additionally, in 2016, the US Census attributed 23% of all family arrangement as children living with single mothers,  while another study by the Kids Count Data Center finds that since 2011 the rate of single black or African American families is 66% to 67%. Additionally, a 2014 Washington Post article notes that, “half of all children will live with a single mother at some point before the age of 18,” and that a black child is more like to be born to a single mom, or a mom without a college degree, than a white child. So, doing the math and being honest in my subjective observations of my sons, I am cautious to not be zealous in a support for male teachers and caretakers because that articulation can easily be skewed and lead to more workplace oppression for women workers. Yet, it is important to not overlook my personal observations as a truth about my sons and begin investigating the benefits of recruiting and sustaining male caregiver and educator roles for all children, with special consideration to its influence on complex layers of care for children with disabilities.

Gender Pay Gap.pngIn fairness, I am still unpacking the layers of taking such a position on this issue. In so doing, it is has been important for me to consider that if there is to be an increase in the recruitment of male teachers and caregivers, what impact would this have on an already skewed and gender imbalanced labor force? Women on average earn less than men in every single occupation for which there is sufficient earning data for both men and women to calculate an earning ratio.  Not to mention, recent studies show the median wealth for single women of color to be only $5. And while in my case, raising two boys with Autism, my experience with my sons show that male caregivers positively impact their behaviors, this is not the whole story on the layers of gender oppression even in terms of accounting for children with disabilities.

Autism Studies and GenderA recent article in The George Washington University Magazine offers insight in the fact that despite studies show that boys are more likely to receive such a diagnosis than girls, there should also be cause for concern on the gender bias against the textbook definition of Autism (i.e. receptive behaviors, impaired communication and social interactions) are skewed measures that only identify how this spectrum developmental disorder might show up in girls. Keeping all these in mind, I temper my sentiment on if labor and other economic factors should bend towards increasing its recruitment efforts to attract and retain male teachers, for example, as the USA TODAY article notes. My subjective desire to offer more men for my children to be influenced in school and healthcare settings is not articulated in ignorance of real oppressions faced by women and girls, even in the realm of Child Find, where girls are identified as having a developmental disability or delay at lesser rates than boys because it shows up so drastically differently.

While still internally interrogating these layers to inform my support of initiatives to increase the role of male professionals in the field of education and healthcare for children, I am still very proud and honored to have spent some time last week with the HSCSN male caregivers group. I also feel that I, as a single mother, was a good candidate to address this group of men within the context of advocating for the rights of children with disabilities. It is important for me to articulate here, as it was to address this with the male caregivers, that women in my position as head of households are not the problem in education or healthcare for black children, as respectability politics might suggest when assessing the problem with the contemporary black family.  Yet, in truth, I cannot raise my children alone, and I have no intention to do so, but even in my acceptance of needing others to join in helping to expose my children to positive men and women role models and caretakers, I wholly acknowledge that the heavyweight of childcare cost and management rests with the mothers. And that this reality requires more gender-balanced analyses of the economic, medical, social, emotional and academic impact of children of all abilities, with respect that even in childhood there are layers to gender based oppression and marginalization.

 

In solidarity,

 

Chioma

 

ESSA and Special Education: the Spectrum of Hopes and Fears of a Parent Advocate

 ESSAsliderimage_525x264v3.pngWe are only half-way through 2017 and already, this year has proven to be groundbreaking in regards to Local and Federal policies regarding delivery of care education services for students with disabilities.  From the landmarks Supreme Court ruling in the March 2017 Endrews F. v Douglass County School District, which ruled in favor of academically challenging individual education plans (IEP) in the least restrictive environment (LRE) as mandated by the Individuals with Disabilities Act (IDEA) revised in 2004, to the June 2017 District Court of Appeals ruling in the D.L. v District of Columbia that upholds a 2011 ruling in favor of the plaintiff and holding the District of Columbia responsible for meeting detailed guidelines to improve upon the Child Find policies for children between the vulnerable ages of 2 years 8 months and 5 years 10 months transitioning into Pre-Kindergarten. And as I write this, today is the first of a three-day Leadership Conference by the US Department of Education’s Office of Special Education in Arlington, VA, where Secretary of Education Betsy DeVos and other notable speakers and presenters will speak in depth on the future of special education with consideration to the changing Federal and State education guidelines. Indeed, these are critical times.

As a resident of the District of Columbia, of which we hold no voting representation in Congress due to not being a recognized state in the Union, our system of organization to carry out education policies is unique and, at times, dysfunctional.  And when it comes to special education, or general issues impacting the rights of individuals with disabilities, the District as a whole and our education system holds deep-rooted cultural biases that inform, and thus limit, progressive policies and practices that could more positively and comprehensively improve the quality of life for those directly impacted of all ages and their families. Beyond being a city-state tasked to carryout mandates that the other 50 autonomous and represented state structures are equally (not equitably) tasked with, we also experiencing growing pains that challenge the systemic intelligence around how our local government manages and integrates care for individuals with disabilities of all ages, with children and youth being the age groups most impacted specifically by educational policies.  The combination of a less-than-desirable state system motivated by forces beyond our control (i.e. no taxation without representation) and a difficult learning curve that requires political will of gigantic proportions to change these deep-rooted cultural biases that inform policies, this combination produces both opportunity and despondency in a parent advocate such as myself.

SPED

The Every Student Succeeds Act (ESSA), which is the Obama administration’s articulation of the Elementary and Secondary Education Act (ESCA), was signed into law on December 10, 2015 and in many ways improves on the Bush administration’s No Child Left Behind Act (NCLB) of 2002.  In a speech delivered at the 2011 annual meeting for the American Association for People with Disabilities, former Secretary of Education Arne Duncan credited the NCLB for its groundbreaking policy, making it impossible for “Americans [to] no longer ignore insidious achievement gaps [for students with disabilities].”[1] With the school year 2017-18 being the first school year that ESSA takes full effect, it is too early to evaluate any of the  areas of improvements to the NCLB, which most notably includes more autonomy for states (and the District of Columbia) in determining how this law is implemented, monitored and measured.  Yet, there are articulations within ESSA that show promising signs that is aligned to champion the rights of children with disabilities while at the same time not being heavy-handed in imposing on states how to achieve greater performance outcomes.

As a parent of two young children with autism, with my youngest still in Pre-Kindergarten, I am encouraged by what I understand to be areas of progressive change to the Federal education policy guidelines in ESSA.  For one, ESSA now requires states to involve the public and representatives of a wide range of the education community as state officials put together accountability plans due of either April 1, 2017 or September 18, 2017.  For the April 1st deadline, fifteen states and the District of Columbia submitted the plans to their governors (or in the District’s case, to Mayor Muriel Bowser) – who in turn submits it to the US Department of Education. Another critical aspect of ESSA is the establishment of “comprehensive center on students at risk of not attaining full literacy skills due to a disability,”[2] which includes a wide variety of disabilities.

Indivualized Education Plan (IEP) alphabet blocksWhile ESSA seeks to transform some of the restrictive policies that limited state’s rights to self-determine their education policies, the IDEA is still the leading legislation that guides in regards to protecting the educational rights of children with disabilities. Similar to the NCLB, ESSA will continue to honor a system that requires states to submit separate performance reports on state tests for students with disabilities, which must still be administered in grades 3-8 and once again in high school.[3] ESSA is also said to place a 1% cap (which equates to 10% of students with disabilities) on the percentage of all students who can take alternate assessments in order to accommodate for students with severe cognitive developmental delays or disabilities.[4] As noted earlier, the verdict is still out on what this all will mean for education outcomes but as a parent advocate for children with disabilities (including but not limited to my own), I am hopeful that ESSA coupled with the rulings in the Endrews and the D.L. cases will put the necessary pressure on the District’s Office of the State Superintendent (OSSE), which is our state education agency (SEA) given authority to monitory the performance and implementation of the ESSA state policies of the 65 local school agencies (LEA) for the District’s public charter schools plus the District of Columbia Public Schools (DPCS).

And even with all this optimism, I am still weary that we have not overcome some of the unconscious biases that influence discrimination against individuals with disabilities and unless there is also some attention given to overturning this culture of violence and silence for some of our most vulnerable citizens that have suffered such cruel behavior as noted in another landmark case Evans v District of Columbia that led to the closing of institutions such as Forest Haven. As a parent, I am still subject to people’s judgement against my parenting and the perceived maladaptive behaviors of my children with autism. I know firsthand the ugliness of those who would otherwise like nothing more than to see my children disappear or be put away due to different ways they express themselves in the world. I am aware that bullying is very real issue for children with disabilities and that our schools have not offered a program that gives me much comfort that my children will not be a target. I know that the unauthorized use of forceful restraint methods on school premises either by school employees or invited law enforcement officers remains a huge problem, as noted in a recent report led by the University Legal Services of the District of Columbia. And I know that so many other parents share these concerns for legitimate reasons.

Additionally because the District is not a State, the unclearly defined roles of our State Board of Education, Public Charter School Board and even those of the Superintendent Hanseul Kang and the Chancellor of DCPS Antwan Wilson, remain vague and lack transparency, particularly in regards to special education services and the rights of students (and their parent/community advocates) with disabilities. Until these issues are addressed and clarified with more rigor and commitment both Federally and through District policies, my optimism will be remain tempered by my fears.

In solidarity,

 

Chioma


[1] “Preparing Students with Disabilities for Success: Secretary Duncan’s Remarks to the American Association for People with Disabilities,” March 15, 2011, US Department of Education, accessed July 17, 2017, https://www.ed.gov/news/speeches/preparing-students-disabilities-success-secretary-duncans-remarks-american-association-people-disabilities

[2] 20 USC 6674: Technical assistance and national evaluation, from Title 20 – Education, accessed July 17, 2017, http://uscode.house.gov/view.xhtml?req=granuleid:USC-prelim-title20-section6674&num=0&edition=prelim

[3] Christina Samuels, “Special Education Groups Push for ESSA Representation,” Education Week, December 30, 2016, accessted July 17, 2017, http://www.edweek.org/ew/articles/2017/01/04/special-education-groups-dig-in-on-essa.html?r=192922611

[4] “Special Education Groups Push for ESSA Representation”

What Happens Next in DC Child Find Policies is Up to Parents and Allies of Children with Disabilities

Frederick Douglass QuoteAfter a weekend of much needed rest and reflection, I have had some time to think not just about what independence means to me but what it means for my children. Frederick Douglass was not only a hero in the anti-slavery movement, he was also prolific in articulating great ideas expressed in speeches such as “The Meaning of the Fourth of July to the Negro“. As we sit waiting for the Republican led-Senate to make its next move in regards to the country’s health care policies that have a major consequences on individuals with disabilities in all walks of live, including at school, I can’t help but reflect on Douglass’s words in saying,

“…your shout of liberty and equality, hollow mockery; your prayers and hymns, your sermons and thanks-givings, with all your religious parade and solemnity…mere bombast, fraud, deception, impiety, and hypocrisy — a thin veil to cover up crimes which would disgrace a nation of savages. There is not a nation on the earth guilty of practices more shocking and bloody than are the people of the United States, at this very hour…”

Douglass is also famously known for saying, “It is easier to build strong children than to repair broken men.” So beyond my reflections on the healthcare system and the pending doom of what comes next, I already know the truth of where, how and who should be on the forefront of the discovery of more loving ways to make policies. Beyond promoting a gendered politic that would suggest that women make better lawmakers than men (which isn’t always true), I believe that children-focused societies are the most balanced. This was the way of many precolonial indigenous societies in the Americas and Africa that have shared mother-focuses (or matriarchal) social structures that put the power in the hands of those closest with the children in utero and in rearing. These ideas put love next to the children (born and unborn) at the center of policy-making decisions. And so, the big picture question I’m meditating on is where is the love? And can love be taught?

Social Emotional LearningI don’t have the answer to these questions and seeking the answers prompted me to join the Collaborator Network of the Collaborative of Academic, Social and Emotional Learning (CASEL) to find ways to promote progressive pedagogy for early child development and how to raise the emotional intelligence with a focus on children. In a very Douglassian approach, CASEL promotes for school districts to develop partnerships with families and community members that are focused on improving education outcomes for children beyond academic performance, highlighting engagement, trust, and collaboration for the benefit of raising more emotionally sensitive and intelligent people. So, as I get more academically knowledgeable on the subject, I am equally in reflection of my own life experiences and internal intelligence to find some these answers.

In the sixth grade at Takoma Education Campus (the school my children now attend), I chose to sing Whitney Houston’s The Greatest Love at the annual talent show. This song was selected not just because my science teacher and mentor, Ms. Weaver, introduced me to it (because she also had us singing Bob Marley’s Buffalo Solider on nature walks) but because it spoke so accurately to my world view both then and now.  I truly believe the children are our future, and even as a child myself that was more on the receiving end than the delivery of these services, it made complete sense that the goal of education was to be guided and then let me lead.  As a parent of children with disabilities, it is important for me now to work hand in hand with their formal and informal educators (“the village”) to ensure that all children receive free appropriate public education, or FAPE.

Mandela EducationI have been thinking deeply about my role as a parent, especially as a single black mother, and how to professionalize advocacy efforts while not losing the human element of interpersonal relationships between families with a common interest to improve educational services and outcomes. For this to happen, it is critical to build trust, create a culture of skills and resource sharing and other such critical elements which are necessary for camaraderie and sustained efforts that fuels any movement.  And we truly are on the precipice of another local parent-led educational movement in the District of Columbia and other places around the country to take us to the next best level of implementation of the many landmark cases and laws when it comes to the education of children with disabilities.

From Title VII of the Civil Rights Act of 1964 to Section 504 of the Rehabilitation Act of 1963 to Title II of the Americans with Disabilities Act in 1975 to the Developmental Disabilities Act of 1984 to the Individuals with Disabilities Education Act of 1990 there is a huge arsenal of laws that protect children and their parent advocates. Additionally, most recently, there’s the  March 2017 Supreme Court ruling in Endrew F vs Douglas County School District case and the series of local landmark cases and legislation including the Blackman Jones , the 2014 Enhanced Special Education Act and now recently the DL vs the District of ColumbiaIt’s like walking into battle in steel armor – while it serves as protective gear, it also requires skill and training to actually fight in such a heavy load…and truly, I dislike using violent examples to explain parent-school relationships in regards to our children’s education but it’s true to life.

These federal and local laws help to break down barriers against access to timely, professionally evaluated and accurately documented educational services as well as due process procedures when there are disagreements between families and the school system. Truthfully, parents have been at the forefront of the majority of education reform policies in the United States, particularly since the 19th century Industrial Revolution which introduced child labor laws, and of course in the many years before that in different forms in precolonial societies all around the world.  Today, there is a yet another need for parents to get on the forefront of legislative support to ensure budgetary commitment to translating case law into policy and practice when it comes to Child Find.  And if for no other reason (and there are many more), the Inclusive Prosperity Coalition exists to midwife this local movement.

freedom-schoolHowever, it is important to note that all parent-led advocacy is not progressive. After all, Secretary of Education Betsy Devos begun her troubling career as a school choice advocate, serving as the chair of the American Federation for Children that claims to want to expand the choice options of families by encouraging the pipeline that sends public funds to support unregulated private schools that may discriminate against certain populations of students including LGBTQ youth and children with disabilities. Yet, despite these negative consequences of things like school voucher programs, a recent study by the Council of Parent Attorneys and Advocates (COPAA) entitled, “School Vouchers and Students with Disabilities: Examining Impact in the Name of Choice,” found that parents often choose vouchers regardless of if there are available civil rights protections and seem to disregard these implications due to the urgency of their child needing to change schools and many other important factors. Yes, it’s true, some public schools are performing that terribly which motivates parents (particularly African American families) to exit like runaways from plantations seeking less hostile environments to rear their children.

Black Power to Black Studies.jpgTo this end, it is important to also reflect on the history of access to alternative education outside of the traditional public school system and the activation of Freedom Schools during the Civil Rights Movement, which linked quality education to access to other pathways to full democratic rights such as the right to vote.  Additionally, starting in the 1970s, the emergence of organizations such as the Council of Independent Black Institutions as part of the Black Studies Movement, a movement well documented in the book, From Black Power to Black Studies: How a Radical Social Movement Became an Academic Discipline (2010) by Fabio Rojas.  Alternative black education emerged in response to an often times hostile public education system. Ironically, contemporary articulations of this quest for liberated black education finds strange bed fellows with conservative architects of the school choice movement that promotes for profit schools for very different reasons of parents and students during the 1960s and 1970s that spearheaded the broader black studies movement from the civil rights era and beyond.

Democracy in ChainsSide note: I hope to soon read and review Nancy MacLean’s Democracy in Chains: The Deep History of the Radical Right’s Stealth Plan for America (2017), which speaks to the history of Chicago School of Economics trained James Buchanan, an early architect of the modern libertarian movement, and allegedly led the anti-Brown vs. Board of Education in Virginia in 1956 through a form of privatization that both suppressed voting and undermined the public education system.

It is difficult (if not impossible) to teach what one does not know. So, to show the children all the beauty that they have inside, as Whitney Houston’s song prescribes, we as parents must find it first in ourselves.  Maybe its the geek in me but I personally can’t think of anything more beautiful than rising to the occasion to roll up my sleeves and solve a problem that can change lives for the better…especially if those lives are children, including my own. And while a real challenge usually has some form of endurance training, I realize that the task in sifting through the ways to practically yet systemically improve DC’s Child Find policies is a protracted struggle, as in its a marathon and not a sprint.

I conclude with the disclaimer that I am not perfect, so I don’t expect other parents, legal advocates, educators, administrators and law makers to be perfect. I also don’t expect for us to come up with perfect processes nestled in perfect policies and procedures and impeccable monitoring and evaluation practices. None of those meet my top ten expectations of what will come next. However, I do expect real commitment to solving the work-in-progress DC Child Find system for preschool transition, transparency and an ethical approach to policy changes and budgetary allocations.  As my favorite move franchise (so much so that I named my son Jedi!) says: “May the force be with us.”

Stay tuned for next stage of our campaign to maintain Early Stages services in DC Public Schools and other areas of improvement in the DC Child Find for preschoolers.

In solidarity,

Chioma

Part 2: What is Basic Income

unconditional basic incomeIn the last post on Basic Income, I alluded to the pilot program that was just approved in Hawaii as well as the project in Ontario, Canada sponsored by the Poverty Reduction Strategy Office (PRSO). I had the pleasure of meeting Karen Glass, the Assistant Deputy Minister of the Ontario PRSO, who is a willing ally to give us tips and support in bringing Basic Income to Washington, DC. But first, before going too far with possibilities, I want to answer a fundamental question: what is basic income and more specifically, what is “universal basic income” (the brand of basic income I endorse)?

According to the Basic Income Action (BIA) Seattle Chapter (they gave free dollars at the conference at Hunter College in NYC!), universal basic income is a policy which guarantees every person a regular stipend, no strings attached, to meet their basic survival needs. It is

  • universal: everyone receives it
  • basic: it is just enough to meet bare survival needs
  • income: it is simply cash in your pocket, no strings attached

This is truly a moment to shape how Basic Income can and will look in the United States, specifically in Washington, DC! According to website of Stanford University’s Basic Income Lab,

“There is an increasing need for in-depth academic research on how to design a universal basic income and how to evaluate its implementation – assessing the visions that underpin unconditional cash, the political and economic feasibility of various proposals, as well as its strengths and weaknesses as a measure to alleviate poverty, precariousness and inequalities…” (Basic Income Lab)

As a parent advocate loyal to ensuring that our local policies reflect the years of advocacy work to promote and protect the educational rights of children with disabilities. Yet, even as a such, I am well aware that children spend majority of their time outside of an educational institutions and that the economic state of the family is a major driver in the academic success of a child, with consideration to medical and other impairments that might compromise their ability to perform on set standards of achievement. Family structure, access to necessary services, knowledge of the laws and policies, influence and a host of other factors contribute to an unequal playing field for our children, and thus becomes their first (albeit indirect) lesson as to how politics works and how they are impacted by it. Access to books, clothes, food, shelter and even a non-stressed emotionally present parent, these are some of the things impacted by the family’s access to sufficient money to care for their children. A struggle to ensure that our city and our country adopt a universal basic income policy with dedicated and sustainable budgetary commitment is a lesson that teaches our children of all abilities and ourselves how to create equity in society – raising the emotional intelligence in all of us.

I don’t take for granted that parents are not a homogeneous population. We have different ideas and life experiences that inform these ideas, yet we have a common interest in a functional education system that gives our children an opportunity to meet and surpass a desire for them to succeed academically and in life in general.  Children with disabilities are the most vulnerable when it comes to meeting this shared interest and failure to understand that the economic state of the family they are born in (or the zip code) determines not just their educational performance but their life expectancy and other health-related issues. So, for me, being an active participant in shaping the future our children with disabilities through advocating for universal basic income means taking account what more equity in the distribution of collective wealth (i.e. taxes) would do to impact the following:

1) Disability culture, a unique expression through the arts and other social expressions that binds those with non-typical abilities that goes beyond oppression and marginalization but represent a variety of worldviews informed by their different abilities that advance humanity. With more access to monies, low and middle income families would likely be able to afford more investments in understanding and participating in the unique cultural expression of our children with disabilities because we’d be making more stress-free choices in their care and development.

2) The reality of raising a child/children with disabilities is not just subject for pity but is a major duty filled with beauty and love that deserves to be understood so on-lookers at grocery stores and other spaces that might witness a tantrum or technically challenging moment with equipment or just real human moment of frustration can be understood completely and be observed without negative judgement. Access to guaranteed income, as basic income suggests, creates more balance in the lives of families and allows for a more harmonious relationship between parents and our non-typically developing children, as well as influences the quality of teachers and caretakers in education and otherwise because they too are making more liberated economic decisions. Imagine if our teachers, doctors, nurses and aides were financially more secure – what impact would that have on the level of care given to our loved ones with disabilities?

3) The great and unique intellectual capacity of children and youth with disabilities (even if their disability is labeled as an “intellectual disability”) are now supported by the landmark Supreme Court ruling in the Endrew F v. Douglas County School District. This means that a core value is that all children can learn, given the right tools in the least restrictive environment. And while this a huge ideological win in how we understand children with disabilities, it opens the doors to other considerations hindering greater access to educational services for our children that doesn’t underestimate their abilities to perform academically. I believe we would see greater educational outcomes for children with disabilities with less stressed parents and access to educators and caretakers that want to engage with our children just for the love of them and not because they need to pay the bills and so they merely tolerate them.

Basic income is a means to which families who otherwise wouldn’t qualify for Social Security Insurance (SSI) to care for their loved one with a disability would have choices beyond seeking loan options from predatory lenders. While this is a proactive way to solve an otherwise dismal outlook for the middle class, resistance against basic income perplexes me. In part 3, I hope to unpack my thoughts on the false equivalent between working and contributing to society, which appears to be rooted in ableism.

Yet, the problem that basic income solves is monumental. Unless you are in the position to understand the high cost of care for a child with a disability and hoops one has to jump to gain any kind of assistance because of the limited understanding of what impact this has  at the intersection of race, class and gender for a single black mother (whose median wealth, despite her education, is $5). The limitation that there are too many stipulations that disqualify families (such as my own) that require assistance but do not classically fit a a neat definition of “poor” due to the means-tests whose metrics haven’t been updated since the 1960s or work requirements that usually associated with SSI or other social welfare programs.

BasicIncome1

The reason I believe that parents advocates of children with disabilities are the perfect advocates for universal basic income is because more than the average American, we understand how cumbersome and humiliating it is to expose so much of your personal financial history in order to potentially qualify for benefits that may or may not come to pass depending on the metrics of the means-test.

It is humiliating to have to prove your worth in order to be considered for additional funding that helps to provide the best quality of life for our loved ones with disabilities. We know better than most what it means to sacrifice making rent/mortgage or a family vacation or even simply select grocery items in order to pay for expensive long-term therapies and other care necessities when it comes to our children with disabilities. We know better than any other population that one should not have to “qualify” in order to need a helping hand in affording complex and unique medical procedure that may or may not be covered by insurance. And so, it is we, that stand to benefit the most from receiving a universal basic income.

There are many equations that can lead to better outcomes that result in equity among the services offered to provide FAPE  in the least restrictive environment for all school aged children in DC public and public charter schools.  Basic income offers a real solution to education related issues by addressing the principal socioeconomic issues that prevent or inspire more parent engagement and more productive out of school time.

[Part 1: (IDEA/Child Find) + Basic Income = Equity]

[Part 3: How Basic Income can Improve Child Find and School Outcomes]

 

In solidarity,

 

Chioma Oruh

If you are interested in blogging or collaborating in research projects, please email motheringhands@mail.com.

Part 1: (IDEA/Child Find)+ Basic Income = Equity

basicincome2This past weekend, I had the opportunity to present at the Sixteenth (16th) Annual North American Basic Income Guarantee Congress at the Silberman School of Social Work at Hunter College. It was such a positive and uplifting event with a variety of people of many political persuasions and representing different industries that all came together to talk strategy on how to make Basic Income a reality in the United State. From Chris Hughes, co-founder of Facebook, to Juliana Bidadanure, professor and director of the Stanford University Basic Income Lab (BIL), to Andrew Stern, former President of SEIU. There were even other folks from DC that I met there and look forward to being connected with! The only people missing from this gathering were parent advocates of children with disabilities. Here’s why I think YOU should have been there:

Forest Haven

One of the catalysts that sparked the creation of the Inclusive Prosperity Coalition is the on-going threat by Early Stages, the DCPS Child Find agency, to no longer directly provide evaluation services for children between 2 years 8 months and 5 years 10 months. This happened in the middle of the persistent class action lawsuit D.L. v. the District of Columbia – the case that motivated the creation of Early Stages in 2009 to resolve previous issues of decentralization and balkanization of the Child Find process in DC. And is also part of some other key legal matters that other disabilities advocates in the District have taken up including another ongoing class action case Oscar Salazar et al v. the District of Columbia that has led to improved and timely access to the Medicaid services for families with children with disabilities in DC. Also, the historic 40+ years Evans v. Washington case that has led to many systemic changes to the treatment of individuals with disabilities, which has motivated a current Bill considered at DC Council and endorsed by many self-advocates and survivors of Forest Haven. This bill speaks to antiquated civil commitment reform practices that limits the self-determination of those with disabilities to participate in their choice of residency that impacts other key life decisions.

basic1

What do all of these cases have in common? These cases can all be summed up to show that low income and middle class families unable to afford private care or, alternatively, private education do not easily receive due respect and full access to human rights considerations that may or may not lead to them to being eligible for government programs to offset these costs that assist a greater quality of life for themselves or loved ones in need of care. With just a bit of more dignity offered when families are in need of assistance, it becomes more possible to have access to medical care and create more opportunities for school choice in the best interest of their vulnerable child/children with disabilities. And these small adjustments made to how business is conducted to give assistance where needed can protect against social catastrophes that have led to many case law, such as the ones listed above, and prevent such tragedies such as the death of young Joy Evans at Forest Haven).

And as I deepen my understanding and respect for the social emotional learning movement, I cannot think of anything more emotionally intelligent than a society that removes food, clothes and shelter from the things we barter on the market when it comes wages and income. Alternatively, I cannot think of anything more inhumane than the gross income gap in Washington, DC where majority of District families spend over 80% of their income just on rent alone. Imagine the financial stress and burden of constant threats to homelessness just to be able to keep a roof over your head. What if we take this off the table for all families and the impact this will have in quality of care for our loved ones with disabilities?

This is a real possibility and I am excited to participate in more processes that make basic income a reality in the United States. And everyday, we are closer – just look at Hawaii that is currently considering taking on a pilot program just as Ontario, Canada recently did. [Read Part 2: What is Basic Income]

In solidarity,

Chioma Oruh

If you are interested in blogging or collaborating in research projects, please email motheringhands@mail.com.

 

Disabilities Competency: Lessons of a Parent Advocate

unconsciousbiasOver the past year, I have been privileged to meet many people operating at various levels of disabilities advocacy in Washington, DC. Ranging from elected officials to accomplished advocates to parents/caretakers to self-advocates, it has been a heartwarming exposure to people who are also passionate around improving our community through personal and political measures to ensure more and equitable access to goods and services to improve the quality of life for individuals with disabilities. I am also honored to have recently been appointed to the National Advisory Committee of Georgetown University’s National Center for Cultural Competency Community of Practice in Developmental Disabilities, which has encouraged me to reflect more on some of my own unconscious biases. I look forward to deepening contacts with other dedicated advocates and self-advocates and in helping to bring in new advocates through our collaborative efforts as part of the Inclusive Prosperity Coalition.

While laser focused on children and youth that with disabilities in DC, there is a bill at DC Council for that impacts the human rights of adults with intellectual and developmental disabilities.  In promoting this issue, I have been encountered with some push back that might suggest that taking a stand on this issue might equate being “off message”. This has also inspired more reflection on my part to be more aware of how privilege works and what it means to be an advocate that is both culturally competent and compassionate while at the same time being strategic and goal oriented. Disclaimer: I don’t have all the answers. The good thing is that none of us do, so I want to again extend invitation to those so inspired to join us in producing content for the Inclusive Prosperity Coalition.

If you are interested in blogging or collaborating in research projects, please email motheringhands@mail.com.

In the meantime, please join me in my processing of disabilities competency!


ATtyandMommyPrior to becoming a parent of children with autism, I rarely spent any time at all contemplating on the lives of those living with disabilities.  In fact, they simply didn’t exist in a real way for me.  Don’t get me wrong, I would see people in wheel chairs, observe those communicating through sign language, see people with their guide-dogs or canes and casually observe someone with a mental disability. My immediate emotional response would be sympathy but just as fleeting as any thought, it would blow like the wind breathing-in and quickly breathing-out, without depth in thought or contemplation of anything that would deeply humanize their experience.  I’ve even participated in workshops and trainings that would cover “ableism” but would intellectualize the concept, as certainly as a black immigrant woman, calculating my privilege is not an exercise that I am used to accounting for. In truth, this able-bodied privilege coupled with the previous sorts of oppression I personally experienced made me a bit arrogant about integrating ideas that would suggest that I benefited anything in American society over anyone.

I make this personal testimony because as I move forward in my advocacy for my own children, I must remain reflective of the times I knew nothing about disabilities rights and compassionate for those who share similar world views as I did prior to being forced to expand my concept of self and those of others in the world.  We are all privileged in some way as well as disadvantaged in other ways, yet striving for equity versus equality makes me more accountable for how I approach situations where I might have an advantage with a similar mind of justice as I would a personal incident of oppression.  This is very challenging to do consistently and even in my awareness, I still struggle to account for many other privileges I might not be aware of until confronted with someone in need of some opportunity available to me that is not universal.

Due to the arduous nature of self-work of maintaining awareness of self and compassion for others, impact on the material reality can be challenging as well. For example, just because I have children with autism and, now, consider myself an advocate for individuals with disabilities it is easy to be singularly concerned with developmental disabilities while turning a blind eye (pun intended) to other forms of disabilities. There just aren’t enough hours in the day to take every issue on or access to enough individual brain power to create solutions to every problem, yet it is critical to respect those others taking up the mantle for a variety of causes and stand in solidarity with them when opportunity presents itself.

Burn outAdditionally, it is easy (at least for me) to adopt a messiah complex that presupposes that no problem will be solved without my contribution. There’s a lot of personal and community damage caused by this approach to advocacy because, on the one hand, one can easily burn out and not create necessary boundaries for self-care that lead to unhealthy lifestyles and imbalanced relationships; and alternatively, studies show that diversity promotes creativity and efficiency in projects that require tangible outcomes.

As a mother, I understand very intimately the instinct and, necessity sometimes, to micromanage, it is an undemocratic way to go about doing things and can cause resentment to those others within a project due to the self-absorbed mentality that somehow nothing good happens without personal input.  And most importantly, for ideas that require directly impacted populations to be involved, it is also a form of oppression to exclude the input and leadership of those that are benefactors of a cause. Again, in motherhood, I have learned the hard way that, even at a very young age, tantrums can be decreased with more “buy-in” and input from my children on a variety of life choices ranging from what clothes and shoes they should wear to what school environment they should be in.

[Side Note: Bill 22-0154 promotes person-centered counseling as a process to help increase self-determination from otherly abled people who might not use words or other popular ways of communicating, in order to get their point across. I am very excited at also having recently participated in a person-centered counseling training offered by the No Wrong Doors Initiative of the DC Department on Disability Services]

And yes, it requires consistent communication, patience and empathy to create a climate of inclusion that is ethical and sincere. Yet, when considering the nature of physical, cognitive and psychiatric disabilities, it is critical to resolve any delusions of grandeur, or messianic intentions, because it can do more harm than good in the long run.

African Parent Meme

Meant for humor. African parents are great!

Growing up in a Nigerian family where there are lots of decisions made based on age and status in the family, we come to consensus in a structured and regulated manner. Due to this, I have to do a lot of personal work to not be an “ageist” when it comes to many decisions. Even as a university lecturer, because I am conscious of my tendency to dismiss the input of those younger than me, I tend to go above and beyond to create a climate where my students feel that my grading them is a collaborative effort. This approach is also true in advocacy. For me, age is not just about the number of years one has lived but also the level of knowledge one has acquired and because I go above and beyond to study, there is a level of arrogance (that is also rooted in privilege) that can come from having mastered some level of information that others either don’t know or are not as articulate to express what they know. In both cases, humility means being able to hold back, step back and allow others to grow at their own pace without feeling like they might be less as human beings just because they have less than perfect mastery over any one particular issue. Again, when considering the spectrum of learning disabilities, it is critical to account for different intelligence when doing public advocacy.

Pedagogy Quote

 

In one of my favorite books, Pedagogy of the Oppressed (1968), Paulo Friere suggests (paraphrasing) that when teaching it is important to keep in mind that people are not empty vessels in which information is poured into, rather we all come to the table with mastery of something. And whatever that “something” is, it is important to acknowledge while introducing new ideas.  Advocacy requires lots of teaching so adopting this mentality has made me a better communicator of ideas and being reflective of my own limitations in knowledge has been my best strategy at remaining humble.

There are many more lessons learned, and surely many more to be learned.  There are many great and free tools on the website of Georgetown’s National Center for Cultural Competency. So, please join me on this journey to be a more inclusive, emotionally intelligent and accountable member of the great network of disability advocates!

 

In solidarity,

 

Chioma Oruh

The Role of Parents in the Movement for Social Emotional Learning (SEL)

Social Emotional LearningThis week, I attended an event at the Brookings Institute on The Future of Children. This event was brought to my attention by one of the members of our Coalition and I am so grateful there was opportunity to not just attend but participate in this very important exchange of ideas.

Truly an amazing insight in behavioral analysis, social emotional learning (SEL) is an evidence-based process that helps our youth get a head start in being conscious participants in creating the best versions of themselves.  In many ways, parents of children with disabilities that require behavioral therapy to assist our loved ones to overcome emotionally stressful milestones such as potty training or self-regulation are somewhat ahead of the curve in understanding the importance of interventions.  And while neuroscience has a long way to go to fully understanding condition such as autism and fragile x, one thing that remains at minimal debate is that behavioral therapy trumps medication when it comes to long-term curbing of undesirable behaviors, particularly in young children. The beauty of SEL is the dedicated commitment to producing sound evidence-based methods gathered from some of the country’s most esteemed scholars in early childhood education.

Based on a newly jointly published edition of the Princeton-Brookings “Future of Children” Journal, SEL was presented at the Brookings forum – attended by a packed house with an eager audience ready to engage in a dialogue led withleading experts that contributed to the Spring 2017 Research Report of the journal.  The central discussion was a on the possible impact of SEL on public health, the importance of effective SEL interventions in early childhood education, the need for SEL both inside and outside the classroom, and policies to improve teacher preparation and assessment.

This forum being my introduction to SEL theories, naturally, I zeroed on in on the “need for SEL both inside and outside the classroom” part. During and after the panel, I had the opportunity to engage with  a couple of the presenters, including Dr. Clark McKown and Dr. Tim Shriver.  In the case of Dr. McKown, it was encouraging to engage in discussion and benefit from his insight on the importance of parent participation. Both of these esteemed participants at the Brookings event are part of the Collaborative for Academic, Social and Emotional Learning (CASEL), which is the world’s leading organization advancing the practice of promoting integrated academic, social, and emotional learning for all children in preschool through high school.

Dr. Shriver, a co-founder of CASEL, also serves as the co-chair of Special Olympics so our dialogue naturally drifted to discussing ways to engage children with disabilities and their families more actively in the SEL movement. It turns out the new Chancellor of DCPS, Antwan Wilson, has been part of the SEL movement with CASEL since he served as the Superintendent for Oakland Public Schools.  These are strong and promising points of connection that our Coalition will work to continuously engage with the District’s leaders in public education to find more measurable and sustainable methods of incorporating SEL both in and outside of the classroom; and available for all students. Specific to our children with disabilities, it was also warming to hear Dr. Shriver discuss the connection between physical activities/recreational sports and emotional development, of which there are exciting ideas percolating and look forward to fleshing out how these can form into affordable programs for our families, especially during the summer months in a city with few camp options for children with disabilities.

Perhaps our partnership with Georgetown to host parent engagement will also be a platform to collect data on the out-of-school time options for children with disabilities in the District and discover ways to close the gaps.  Although the American’s with Disabilities Act (ADA) prohibits discrimination based on ability, requiring after school programs, as well as all public schools and most child care centers and private schools, to develop a plan to make all facilities, programs and services available to all families, there remains several gaps in the District’s schools and other such organizations to be commitment to doing more than the bare minimal when it comes to ADA compliance. One of our key goals is to be an evidence-based advocacy organization, collecting primary data and using necessary secondary data to support our efforts to ensure the educational protection for our vulnerable children with disabilities – both in and out of school times.

At the Brookings event, Dr. McKown, a participant in the CASEL Assessment Work Group, offered some critical insight on how SEL can be come subject for dinner table discussion and the tools become useful for a variety of family structures across cultural and linguistic lines.  The Working Group, which is a multidisciplinary collaborative of leading researchers and practitioners in the fields of PreK-12 education, assessment, SEL, and related fields, also offers another space in which our Coalition can make an impact through scholarship and grassroots data collection.

As we further develop a relationship with CASEL and those that are part of its research and advocacy network, especially as it pertains to children with disabilities, the need for more a more cohesive coalition will become more critical. SEL offers a clear methodology of how District of Columbia classrooms can become inclusive environments, safe from bullying and other negative behaviors that some of our youth engage in that disproportionately target other young people with disabilities.  Thus it is a very exciting journey to learn more about evidence-based tools and assessments that include parents as active members of a school’s community of learning to increase the emotional intelligence in our children and ourselves! I look forward to more active engagement from our membership and expanding our reach throughout this great city of Washington, DC for the educational protection our children with disabilities.

In solidarity,

Chioma Mary Oruh, Ph.D.

Intersectionality and Disability Rights

Intersectional Disability OppressionWe are living in a tense political climate both locally and nationally where lawmakers seem out of sync with the needs and desires of everyday people.  When local tax cuts are proposed in the midst of one of the most unstable national climates, also proposing tax cuts, it begs the question: where do our leaders think the money to fund essentials like healthcare, education and recreation will come from?

For parents born in the 1970s and beyond, it might be difficult to conceptualize a United States of America before the passage of land mark Federal laws impacting welfare, healthcare, education and the environment on the local level. Yet, in this era of increased jeopardy to continued support of such programs., parents, particularly parents with vulnerable children with disabilities must arm ourselves with factual political history of the many laws that protect our families. And such a critical process is most effective when taking into consideration that disabilities rights do not exist in a vacuum and are rather interrelated with other critical laws impacting overlapping marginalized groups that are also organized and advocating for funding and social change.

In the now classic article by Patricia McGilll Smith, former Executive Director of the National Parent Network on Disabilities, entitled “You are Not Alone: For Parents When They Learn That Their Child Has A Disability,” she states:

…When parents learn about any difficulty or problem in their child’s development, this information comes as a tremendous blow.  The day that my child was diagnosed as having a disability, I was devastated — and so confused that I recall little else about those first days other than heartbreak. Another parent described this event as a ‘black sack’ being pulled down over her head, blocking her ability to hear, see and think in normal ways.  Another parent described the trauma as ‘having a knife stuck’ in her heart. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents’ minds and hearts when they receive any bad news about their child” – You Are Not Alone

While Smith frames isolation in All Oppresssion is Connectedterms of emotions, this feeling translates politically with every new phase parents reach to access new services in the home, school and community once the reality of having children with disabilities has set in. It is important to note that isolation is essential to oppression. This is achieved by limiting the scope of understanding a problem. Not unique to isolation, once a person or a group of people adopt their aloneness, or isolation, as part of how they understand a problem and what they do about this problem, it is much easier to dismantle or manipulate this narrow interest group.  In Paulo Freire’s book The Pedagogy of the Oppressed, he brilliantly articulates the strategy of divide and rule as a fundamental dimension of the theory of oppression.  Freire states,

“As the oppressor minority subordinates and dominates the majority, it must divide it and keep it divided in order to remain in power. The minority cannot permit itself the luxury of tolerating the unification of the people, which would undoubtedly signify a serious threat to their own hegemony.  Accordingly, the oppressors halt by any method (including violence) any action which in even incipient fashion could awaken the oppressed to the need for unity…It is in the interest of the oppressor to weaken the oppressed still further, to isolate them, to create and deepen rights among them…” – Pedagogy of the Oppressed

The study entitled “Work-Family Fit:  Voices of Parents of Children with Emotional and Behavioral Disorders,” finds that one in four US households with children will have one or more children with disabilities, ranging from mild to severe, manifesting as physical, mental, or both. There are several factors informing a parent’s response to learning a child has a disability – many include socioeconomic considerations.

Beyond initial emotional response to prognosis, the reality of living with children with disabilities can be a complex arrangement of overlapping and intersecting social identities that inform the quality of life one is able to provide their child. For example, wealthy families experience raising a child with a disability differently than a family in poverty.  At the same time, sacrifices made in consideration in caring for a child with a disability can be informed by other factors gender, race and even immigration status. For example, mothers (more likely than fathers) frequently reduce their work hours or quit work altogether to care for their children with disabilities regardless of if they are married or single.  Yet at the same time, the study entitled “Work Choices of Mothers in Families with Children with Disabilities,” found that single mothers with young children with disabilities have been found to be 17% less likely to work full-time compared to a single mother whose child does not have a disability.

Also, while there is much room for study on immigrant families with children with disabilities in the US, there is a recently defended Master’s thesis in Interdisciplinary Studies from the University of Iowa by Rochelle Renee Honey-Arcement entitled, “Immigrant parents of children with disabilities and their perceptions of their access to services and the quality of services received” (Spring 2016). In this thesis Honey-Arcement recommends the need for disabilities advocates to learn about the impact that cultural differences in values and communication, along with racism and language barriers have on accessing services. And as such, recommends a need to devise ways to get this information disseminated beyond such linguistic barriers.

The famous 1966 study by James S. Coleman entitled, “Equality of Educational Opportunity,”  concluded that of all contributing factors to academic success for children, family educational and/or economic background is a bigger factor than school resources or other more popular ideas around improving student performance including: school expenditure levels, class size, and teacher quality.  Coleman’s 700+ page report was released about year after then-President Lyndon B. Johnson signed into law the Elementary and Secondary Education Act of 1965, which dedicated federal funds to disadvantaged students through the Title 1 program currently under jeopardy in funding in the proposed Fiscal Year 2018 Federal Budget by the Secretary of Education Betsy Devos.

In light of the assault on public education via the current Department of Education. This, along with the economic stress of raising a child with a disability in an unstable marketplace where concepts like Universal Basic Income, as recently spoken about by Mark Zuckerburg, do not yet have community buy-in that leads to tangible local and federal policies governing such income protection practices, it is uncertain how families will be able to cope under the current political climate.

While, typically used to describe the current politics in Europe, austerity measures are a continuous and common threat in the United States and explains the ideology of many of our law makers on both sides of the isle and across various levels of government. In a recent book entitled The Violence of Austerity (2017), edited and translated by Vickie Cooper and David Whyte, explains the impact of these policies in the United Kingdom as followed:

“Austerity, a response to the aftermath of the financial crisis, continues to devastate contemporary Britain. In The Violence of Austerity, Vickie Cooper and David Whyte bring together the voices of campaigners and academics including Danny Dorling, Mary O’Hara and Rizwaan Sabir to show that rather than stimulating economic growth, austerity policies have led to a dismantling of the social systems that operated as a buffer against economic hardship, exposing austerity to be a form of systematic violence. Covering a range of famous cases of institutional violence in Britain, the book argues that police attacks on the homeless, violent evictions in the rented sector, the risks faced by people on workfare schemes, community violence in Northern Ireland and cuts to the regulation of social protection, are all being driven by reductions in public sector funding. The result is a shocking expose of the myriad ways in which austerity policies harm people in Britain.” – The Violence of Austerity

Put to a local framework, the DC Fiscal Policy Institute offers insight in a recent position paper by Peter Tuhtsthat entitled, “A City Breaking Apart: The Incomes of DC’s Poorest Residents Are Falling, While Economic Growth is Benefiting Better-Off Residents” states:

“The income of the poorest DC households is now lower than in most major cities, and far lower than in the DC suburbs, an especially serious problem in a region where the cost of living is among the nation’s highest. DC’s persistent income inequality is also wider than in almost any other U.S. city.” – A City Breaking Apart

With these considerations, one may ask, what does this have to do with advocating for the educational rights of children with disabilities?

intersectionalityThe answer is: intersectitonality. A theoretical concept coined by lawyer and scholar Kimberle Creshaw, intersectionality is  a framework that describes how overlapping forms of discrimination and how structures make certain co-occuring identities (ex. single mothers, African American, LGBTQ, immigrant or homeless families raising children with disabilities) are vulnerable to exclusion and other forms of oppression. Intersectionality offers intellectual space to interrogate how certain privileges impact social outcomes and the role of institutional decision-making practices in policies and laws in protecting or exposing overlapping vulnerable groups. Crenshaw develops this concept primarily to explain the connections between gender and race; as both are impacted by patriarchal and racist systemic arrangements yet impacts other identifies such as sexuality, ability and socio-economic class status, to name a few.  She argues that in the absence of an intersectionality analysis, proper understanding of social issues are undermined by our inability to develop inclusive coalitions to impact change that is beyond a singular identity.

Specific to drawing intersections impacting children with disabilities, there are many lines that bring together a variety of oppressed categories. There are many intersectional forms of oppression when considering the challenges facing families raising children with disabilities. Beyond the classic sociological trinity of race, class and gender, there are sub-categories within this tripod that create nuances within the spectrum of geopolitical and socioeconomic challenges facing families raising children with disabilities.

In a study entitled the “Material Hardship in US Families Raising Children with Disabilities,” highlights that compared with 16% of children without disabilities, 28% of US children with disabilities live below the federal poverty threshold due to the additional financial expenses related to the child’s disabilities including therapy costs, specialized day care, and adaptations and modifications, etc. Through analyzing the material hardship of 42,000 US households with and without children with disabilities across four (4) domains:

  • Food insecurity
  • Housing stability
  • Telephone disconnection
  • Health care access

In review of these poverty indicators, the study found that across income levels, children with disabilities and their families experienced significantly more economic constraints that families whose children don’t have a disability.  A major poverty indicator is the ability to pay rent and/or other housing related utilities. The study finds that families with children with disabilities are 72% more likely than other families to have been unable to pay rent in the previous the previous year; and these families were 81% more likely to have had phone service disconnected for more than a day during the prior year because of nonpayment.

Familes Disabilities Hardship

To read the complete study, click here

Additionally, there are significant barriers when it comes to access to health care for families with dependent children with disabilities. These children are more likely to have access to some form of health insurance coverage, such families had to delay necessary medical and dental care more often than other families.

There are many proposed solutions to this phenomenon of poverty making due to raising a child with a disability, some of which include making adjustment to Social Security Insurance and Medicaid – access to both are under jeopardy in the proposed bill in the Congress. Additionally, with a proposed $9 billion cuts to public education as proposed by Secretary of Education Betsy DeVos, there is uncertainty surrounding the impact of promoting school choice in the largely deregulated charter schools and the protection of the educational rights of children with disabilities. The impact of such policies is already locally felt in Washington, DC, with 66 LEAs (as in DCPS and 65 public charter schools) , there is chaos at the base when it comes to creating policies that actually protect families with children with disabilities regardless of their school choice.

In conclusion, Martin Luther King, Jr is quoted for saying, “Power without love is reckless and abusive, and love without power is sentimental and anemic.” The framework of intersectionality offers powerful insight that must be guided by a love for humanity, in the spectrum of abilities that make up the human experience.  It is an expression of love to see beyond ones own privilege. And the Inclusive Prosperity Coalition looks forward to a fruitful Summer 2017 our partnership with Georgetown University Center for Excellence in Developmental Disabilities, the Deputy Mayor for Education, the Deputy Mayor’s Office of Public Safety and Justice, our various City Councilmembers and many other community partners, working hand in hand to ensure that our intersections lead to solutions for protection of children and youth with disabilities in this great city.