The Sound Off! blog is a place for CCDC members to share their experience of living with a disability from the perspective of a disability rights activist. Express opinions on disability issues or other issues that relate to disability. Share their feelings about the issues of the day.
When Dawn Howard was two years old, her parents were told that she would not likely have “any intelligible speech.” But Dawn, who was born with slight cerebral palsy, says “I had a pushy mother, who did find a speech therapist who would work with me.” She pauses. “And I am so thankful for that.” From preschool on, Dawn was fully included in school, though was often the only physically disabled child in the class.
As an adult, Dawn passed the national exam to become an occupational therapist, but found that her cerebral palsy made it difficult to physically transfer or lift her clients. So she went back to school for library science and worked as a librarian for 13 years. But during her last two years working in the Denver public library, Dawn says she was “discriminated against, bullied and nitpicked out of a job.”
Suddenly unemployed, Dawn took a 10-week disability advocacy class through the Colorado Cross-Disability Coalition (CCDC), a state disability rights organization that advocates for social justice for people with all types of disabilities. Dawn quickly became involved in CCDC’s work as a volunteer, and within a year, was hired on as a community organizer.
CCDC is run by and for “people with all types of disabilities: from Down Syndrome to Cerebral Palsy, Spina Bifida, Autism, people with brain injuries, people with mental illness, those who are blind or deaf, and much more.”
As the organization’s motto goes, “Nothing about us without us.”
Shannon Secrest came to CCDC by way of a different path. Thirteen years ago, she began the process of accessing resources for her now 16-year-old son. Considered “medically complicated” and with 12 different diagnoses, Shannon’s son qualified for myriad care benefits and resources, but Shannon encountered barriers in each system she navigated—from education to healthcare to social security.
Frustrated, she went back to school and joined every relevant committee, council, and commission she could. Like Dawn, Shannon enrolled in the CCDC disability advocacy class. Last year, she was brought on board as a full-time staff member. She’s also back in school full-time, getting a Master’s in Public Administration, with a focus on policy analysis.
“Quite honestly,” says Shannon. “I just got tired of being told no. Or that I was just a mom and didn’t understand fiscal responsibility or legislation or school finance.”
As an organization, CCDC engages in both individual advocacy (“the process of assisting an individual member to correct a problem with the system such as obtaining or maintaining a benefit or service or solving a problem with a service provider, landlord, employer, etc); and systemic advocacy (“the process of changing rules or laws that interfere with the rights of all people with disabilities”).
Those wishing to become a certified advocate and to represent CCDC are required to complete the organization’s 10-week Disability Advocacy Training Class. Offered in-person or remotely, (and as an accredited opportunity with the University of Denver) the class is open to anyone “interested in learning the basics of advocacy…or anyone looking for additional skills necessary to work in the field of disability services, advocacy, community organizing, the legislative process, or civil rights law.”
Part of the “beauty” of the class, says Shannon, is in the diversity of the participants. “Not only that we’re advocating for people in our community, but also training up allies and accomplices to understand the work we do.”
After the class, Dawn works one-on-one with graduates to strategize where they’d like to devote their time and energy as advocates. “I say, okay you’ve had a good overview in the class. Now, where does your passion lie?” explains Dawn. Sometimes students are particularly interested in transportation, Medicaid, or housing, so Dawn will suggest committees or councils they might join on behalf of CCDC.
“It’s a very targeted way to do relational organizing,” says Shannon. “We’re really trying to tailor it to their desires, rather than trying to fit it into the whole. We’re not going to be prescriptive. We want you to do what ignites your passion.”
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CCDC was made aware that yesterday an ADAPT leader Bruce Darling made an inappropriate comment saying that Democrats cared more about immigrants than people with disabilities. Mr. Darling has apologized in writing for these comments and has acknowledged that this is inappropriate, divisive and that “oppression Olympics” serves no one. We agree.
CCDC is proud of our long affiliation with ADAPT. Many of us at CCDC are ADAPT members and participate in ADAPT actions. CCDC understands the frustration when politicians that use us to get elected ignore us. This frustration is something communities of color have dealt with for decades and continue to deal with throughout the country.
The situation for immigrants in this country has reached a crisis point. National “leaders” are bullying, threatening, belittling, and intimidating immigrants. People who even have family members who are immigrants are being intimidated into not using services that they need. This hostile climate is antithetical to what America is….after all, we are a nation of immigrants. Only those who are Native American/Indigenous People are not from another country. CCDC appreciates the lawmakers that are speaking out against the abhorrent conditions at the border, and fighting back against the mistreatment of immigrants around the country. CCDC believes there is bandwidth for our elected officials to deal with more than one issue and that ignoring disability issues is due to ableism, nothing more and nothing less.
As a social justice organization, CCDC must speak out –otherwise we are complicit. More than ever, we must be vigilant to not fall into the trap of frustration of blaming and othering. The current hostile and divisive political climate can and should be blamed, but it is because of this climate that we all must take extra care to be personally responsible and avoid these comparisons. We must stand with our brothers and sisters (with and without disabilities) who are new arrivals as a matter of social justice and mutual commitment to a more equitable society.
We will not comment or opine on the intent of Mr. Darling. It is never acceptable to pit oppressed groups against each other. We hope that the larger social justice community will not see these comments as reflective of the disability community. Our community is diverse and includes many people who have intersectional identities as immigrants, migrants, new arrivals and people with disabilities. We are not immune to the racism and xenophobia that permeate our organizations and all American communities, but we are responsible to address it inside and outside of our organizations.
Five years ago, our son Isaac was diagnosed with SMA Type 1. He was four months old, and I remember talking to my family about the implications of the diagnosis. We went from coming to terms with the knowledge that Isaac would likely spend his life in a wheelchair to realizing that his prognosis was much worse than “he’ll never walk.” He would not sit. He would not eat. He would not swallow, speak, turn his head, move his hands. He would not breathe on his own. He would not likely live to see his first birthday. There was no cure. There was no treatment. All the while, he would be the sweetest, happiest, brightest little boy. We were devastated, and, even today, that word does not capture what we really felt. We prayed he would live long enough for his older sister to remember him. We prayed that when his time came, we would all be there with him.
But Isaac did live to his first birthday, and then to his second. He loved reading books and playing with switch activated toys, coloring with his sister and swimming with his daddy. He started vocalizing to communicate, and talking and playing with his eye gaze activated communication device. Fast forward to his third birthday, a few months after the FDA approval of the first treatment for Spinal Muscular Atrophy (SMA). We knew it would not be a cure, but we hoped it would keep him from losing what strength he still had. Isaac received his first doses of the drug and promptly started turning and nodding his head. He gained strength in his extremities. He started working with his physical and occupational therapists to sit upright with support and to operate a joystick. As he outgrew his medical stroller, we started talking about a power chair. All of his physicians and therapists agreed that he could manage it, that it would benefit him, and his friends at school started getting excited to race him on the playground!
When he was three and a half years old, Isaac completed his first power chair trial at NuMotion. He was amazing! We knew the insurance process would be long. Since we had such good experiences with his Medicaid in the past, we were not overly concerned. We celebrated Isaac’s fourth birthday. NuMotion provided Medicaid with additional information. Medicaid was slow to respond. Finally, more than a year after his initial trial, Medicaid officially denied Isaac’s power chair. The only problem was that they never told us. We waited and waited for a reply from Medicaid, and finally we reached out to CCDC for help. CCDC Non-Attorney certified advocate and graduate student intern, Nicole Bishop, was assigned to our case, and from the very start, I knew we were in good hands. She was completing her internship and had additional support from what seemed like the entire CCDC staff. I remember that it was around Christmas time when we started the appeal process, and Nicole had some serious digging to do. She discovered that the chair had been denied, and then she filed for improper notice of denial. We celebrated Isaac’s fifth birthday, then we set a date for the court hearing. We began gathering evidence that Isaac could drive the chair, and that he would be able to drive it in all of the needed environments. NuMotion bent over backward to get Isaac a demo chair for us to take home for a weekend. We took so many videos of him driving!
When we had about a week left to gather documents and evidence and compile a witness list, Nicole called the court to verify the best format for submitting the videos. Late that Monday afternoon, she learned that, since we were sending videos, the court would really like all of the materials by Wednesday. Nicole and I allowed ourselves a moment of panic, but then we put our heads down and pushed on. I spent the night editing videos and sending pleading emails to Isaac’s medical team for them to rush their letters of support by the next day instead of the next week. Every single one of them responded with the letter, some of them arriving in my inbox after midnight. The next morning, as I sent Nicole yet another email (seriously, you should see the chains we had going), I noticed that her last email to me had been sent at 4:30 a.m. She had stayed up all night, literally, to prepare Isaac’s case. I was overcome with gratitude at the lengths people would go to in order to help Isaac. And we did it, we submitted everything in time! Then we waited.
Just as Nicole was starting to prepare all of the witnesses for the court hearing, we heard the best news. I opened my email, and there, in the subject line, “We won!” I opened the email, read it twice, and screamed! I ran to Isaac and told him that he was getting his power chair. He shrieked with joy, his sister shrieked with joy. My husband came in to ask what was going on, and he sighed with such relief. I cried when I heard that two other children had their chairs approved along with Isaac. We would not have to go to court because the evidence we had gathered was enough to convince Medicaid that Isaac could and should drive a power chair. Nicole, and her mentors at CCDC, were exactly who we needed to help Isaac get his chair, and for the first time in his life, a measure of independence.
This past week, we went to pick up Isaac’s power chair. It is his favorite color, bright orange. He is practicing every day so that he can safely drive it independently. We can’t wait to see where it takes him!
You will not find restaurant reviews on the CCDC blog often, and almost never by me, but today is different. CCDC took the members of our legislative team who were available to lunch today at Pizzability at 250 Steele Street to thank them for their many hours of tireless work this session. They were an admirable team and deserved more than lunch. However, lunch and our undying gratitude are what we can provide. Our amazing community organizer Dawn Howard chose the location.
Like most restaurants in Cherry Creek North, it is physically small. Unlike any other restaurant in that area where I have eaten, I did not feel in the way—even when I was objectively in the way. In any space, when a bunch of us come in at the busy hour we can be..well…in the way. It only takes a couple of wheelchairs, never mind some canes, walkers, dogs, and general klutziness to make us seem like we are taking over. When we are doing an action that is exactly what we want, but when we go to eat out, whether individually or in a small group we do not want to feel as if our mere presence is an inconvenience. So today we show up and our presence overwhelms the place both physically and logistically. Yet we are greeted with warmth and genuine pleasure that we are there. When I was objectively in the way blocking an aisle no one bumped into me, no one asked me to move, no one gave me “the look”. No employee rushed to serve me quickly for the purpose of getting me out of the way.
Most of our crew had ordered but there were three of us left when I arrived. The bill for three lunches in Cherry Creek North came to $16. The food was good. Most significant for me is that they had Gelato—I saw that and forgot about pizza. The slices that my colleagues ate looked terrific. They were big, and hot and had many varieties. Salads were an option also and non-alcoholic drinks appeared to be free with the pizza. They had some alcohol for sale as well…soon they will have pairing suggestions.
As you might guess by the name, this is a restaurant that sells mostly pizza and most of the employees are people with disabilities, particularly people who appeared to have intellectual and developmental disabilities. Most of the customers eating there today appeared to have disabilities as well.
My personal food tastes are more in line with other places in Cherry Creek North. Earlier this week I had an hour in between meetings in that part of town and went somewhere else. The food I like (and admit it is kind of ridiculous food) is more like an overpriced salad with things like goat cheese, grapes, and cranberries. I had that with unsweetened tea (trying to be good diet wise) and while the food was delicious, and there was much more physical space in this place than at Pizzability, I felt completely in the way the entire time I was there. It was uncomfortable. While no one was rude or even unkind it was my presence was made people uncomfortable. I had to ask several people to move to get to a space to eat. I actually considered getting it to go even though it was raining and cold that day. I am sure the people in this restaurant (staff and customers) would have been relieved had I just taken the food to go. Today, when some of choose to sit outside at the tables (it was probably 60 degrees and felt lovely) they asked repeatedly if we were sure we were comfortable and offered to move things around if we preferred to be inside. The offer was made in a manner that showed respect and that they valued our business.
There were other cool features. The menus are paper and you circle what you wanted and write your name. Accessible for Deaf folks and people that do not speak English, do not read, etc. Some work would be required to make it accessible for blind folks (there is a menu online). There was a “sensory corner” with various objects. Each plate was different and they were painted by artists from the Access Gallery (an art gallery for disabled artists).
There did appear to be someone without a visible disability running things and the way she talked there was a training component for employees. (I learned later on their facebook page that this is indeed a training program)The employees were working hard and seemed happy, and the work is real work that valued employees do in restaurants every day. If part of the goal is to train workers for “integrated” jobs, I am sure that will work. However, some employees may want to stay and be around others with disabilities. Maybe some will become supervisors or trainers. Maybe some will prefer to keep doing the great job they are doing today.
Is this segregated? Maybe? Not sure that it matters because it is a choice. Doing a good job and being paid for work, and continuing to learn and improve at one’s job is what adults do in our society. Other groups have businesses that are primarily run by and serve specific communities. They do not eschew customers from outside groups but they cater to their own communities. This is how disenfranchized communities build economic power. There are “pink pages” advertising gay-owned businesses. There are Latinx and Black Chambers. Why not promote and support more disability-run/disability positive businesses? Non-disabled people can work and eat there but the atmosphere and culture stay disability positive. Just like as a white person I can go to eatery owned, staffed, and patronized mostly by people of color. I am welcome to show up but not to inappropriately take over the culture of the place (as white people often want to do). Communities of color started and continue these businesses because there is an economic and cultural need for spaces that do not have to bend to the dominant culture. That is cultural pride, not involuntary segregation. We need to start understanding the difference.
We need businesses like this in our community..that is by and for our people. Where non-disabled allies are welcomed but where our disability culture and our vibe will stay the dominant feeling. We need to stop defining success by how much we interact with people who do not have disabilities.
I know that I preferred eating lunch in a disability positive environment, among not only my peers/colleagues with disabilities but among other customers and employees with disabilities. I would rather eat in a place where I feel comfortable and welcome than in a place where I am obviously in the way. The next time I happen to have an hour in between meetings in Cherry Creek North, Pizzability will get my business! I encourage you all to do the same. I am sure they will also welcome those of you without disabilities too.
Keep Your Eyes on the Prize
The results of this past Tuesday’s municipal election in Denver were, I think, a grave sadness to most of us believe in. In many ways, fear and the status quo defeated human rights, money defeated compassion about poverty, and misinformation triumphed over all. But, even with all of that said, many races are going to runoffs, and many of those races pit candidates of the status quo against people who believe in human rights, in greater accessibility in our city, in criminal justice reform, and so many more issues that I believe are our issues nearly as much as Medicaid, LTSS, and CDASS are. So, as the great folk song and spiritual says:
Keep your eyes on the prize, hold on
Freedom’s name is mighty sweet
And soon we’re gonna meet
Keep your eyes on the prize, hold on
We are not done. For those of us who live in northwestern Denver, north-central Denver, including downtown, Five Points, Elyria-Swansea, and beyond, a stretch of central Denver from eastern Capitol Hill to north Cherry Creek, and even in east-central Denver, we are not done and we must keep our eyes on the prize with these runoff elections. I know we want to slow down after the legislative session and the first round of balloting in the municipal election, whether in weariness or frustration, or both. But we can’t do that just yet. Our city deserves better and our community does too.
This was a busy session as is typical whenever there is a new administration and many new legislators. Despite some unfortunate partisanship that caused delays, the reading out loud of 2000 page bills, hearings that occurred during a blizzard, and overnight sessions some great work did get done that will benefit the people of Colorado including people with disabilities.
Before talking about the bills, I want to call out the amazing CCDC team that worked at the Capitol this year.
CCDC wants to thank our many partners, in particular the Arc of Colorado, Arc of Aurora, Arc of Adams, the Colorado Center on Law and Policy, the Colorado Children’s Campaign, 9-5 Colorado, ACLU of Colorado, Colorado Senior Lobby, Disability Law Colorado, Colorado Common Cause, PASCO, and Accent on Independence Homecare amongst others. We also want to thank Colorado Capitol Watch for a great product that made tracking the bills easier.
Because this was a year with many new legislators and many groups rushing to push through bills that had struggled in years past, many of which were bills we were going to support, CCDC made a deliberate decision to NOT run our own proactive bills this year but to focus on our coalition work, and building relationships with the many new Senators and Representatives. We laid groundwork for policies we want to promote over the next few years while focusing on the many coalition bills and responding to bills that affected our community. We followed 139 bills. This report shares the highlights-not every bill that we worked on during the session.
This is being dubbed the year of the renter. There were many bills that helped renters, along with some that will fund affordable housing.
THERE WERE A NUMBER OF BILLS RELATED TO THE COST OF PRIVATE INSURANCE AND HOSPITALS. PLEASE CHECK OUT THE COLORADO CONSUMER INITIATIVE OR THE COLORADO CENTER ON LAW AND POLICY FOR REPORTS ON THOSE BILLS.
Overall it was a good year. There were some disappointments, but there always are—now we have to make sure the bills we like get implemented and make sure people know about these new laws and programs.
“The arc of the moral universe is long, but it bends toward justice.” ~ Martin Luther King Jr.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” ~ Margaret Mead
The quotes above are apt for the power we showed two weeks ago as many of us in the disability community contributed to informing our Senators that a change was needed in SB 19-238, Many individuals negotiated with SEIU, called other CCDC members, and /or showed up at the capitol for the hearing in the Senate Health and Human Services Committee.
Building power as a community of people with disabilities and family members requires all of us to do many small tasks. Calling, writing legislators, showing up for legislative committees, going to stakeholder meetings, talking to friends and family members about disability rights. Each activity may appear too small to make a difference. When we each complete small tasks we move the arc closer toward justice. Justice which will free ourselves and others to contribute to our communities and to build a more equitable State with supports and services for Coloradans who have disabilities.
Thank you to each CCDC member who contributed to nudging the arc of the universe toward justice.
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TO: Members of the Senate Judiciary Committee
FROM: Julie Reiskin, Executive Director, Colorado Cross-Disability Coalition
RE: HB19-1225 and SB 19-191
I am writing on behalf of the Colorado Cross-Disability Coalition (CCDC) to ask for your support of HB19-1225 and SB 19-191. CCDC is Colorado’s largest disability-led membership organization. Our mission is to advocate for social justice on behalf of people with all types of disabilities (cross-disability).
CCDC strongly believes and states in our strategic plan that people with disabilities must have both rights and responsibilities. Much of policy work is geared towards creating systems that enable people to engage in the full responsibilities of citizenship. We have made great strides in Colorado, but have a long way to go. Because of the many systemic injustices and barriers faced by people with disabilities, our community is disproportionately affected by poverty, lack of education, and unemployment. These systemic barriers are reversing, but very slowly.
One example is that since 2014 we have had the ability to buy into Medicaid while still being able to engage in competitive employment, and earn and save money. Since having this option the percentage of people with disabilities working full-time and full-year increased from 26-29% (as of 2017 the last year with available data). Therefore we still have more than 70% of people with disabilities are NOT employed full time and full year. Those not able to take advantage of this great program, or those still scarred by years or even decades of being told that work is impossible and savings constitutes some sort of fraud remain in poverty and often are reliant on programs that do not allow them to ever accumulate more than $2000 in all assets combined in any one month. If someone gets an SSDI check of $1200 this means that they could never have more than $800 in the bank.
Because of systemic discrimination, people with disabilities are dramatically overrepresented at every stage in the criminal justice system. Jail is no exception. People in jail are 4 times more likely to have disabilities than people in the general population, and more than half of people in jail have psychiatric disabilities. The injustice of these disparities are heightened in the pretrial conext, where presumptively innocent people may have their lives derailed from pretrial detention for a crime they did not commit or which is so minor that they would never even receive jail as s sentence. I share this to explain why HB 19-1225 and SB 19-191 is so important for people with disabilities.
When someone is detained pending trial a plethora of other problems can occur that are exacerbated by living with a disability.
In some housing situations, particularly assisted living, if one is gone more than a limited number of days one can lose their place. Then the person is not only facing criminal charges, but is now experiencing homelessness. Replacement housing for low-income people with disabilities is very unlikely..especially if there is some sort of criminal record.
Many people with disabilities are living in deep poverty. There is no extra money and they balance every month trying to manage. Fees involved in the criminal justice system add up quickly and if they pay, this is likely to cause the individual to not pay rent, utilities or other bills. Often they will give up services such as their phone, which then removes all of their data, reminder systems, etc. They then are not able to be reached and often get in more trouble for missing deadlines and appearance dates. For people unable to physically write, or those with cognitive disabilities who may have been trained using specialized apps to manage information are particularly hard hit. Finally, people often skimp on food and eat what is cheap, which causes secondary health issues OR they are forced to skip psychiatric medication because they do not have food to take with the meds.
Often when people are kept in jail too long due to problems releasing people after they have posted bond people have other problems. They miss scheduled medications, people who use oxygen may run out. Some people may require oxygen only at night but if they are kept in jail overnight a medical visit is required before the jail can provide oxygen if the individual has none. People in supervised living situations have curfews. Sometimes people are released so late that there is no public transportation. Because jails cannot give family or friends a specific (or even approximate) time, arranging for transportation home is a problem.
Unfortunately, poor people often have many debts. Once someone is involved with the criminal justice system they start incurring fees and fines. This can include fees for taking “classes”, fines for missing said classes, fees for “therapy” groups, and various other charges. When one is again arrested, any fees applied to the new bond should not be taken to address anything else.
HB1225 and SB191 are both smartly aimed at safely and smartly decreasing our pretrial population, in which people with disabilities are hugely overrepresented. Our support of this bill in no way implies that we think people with disabilities should not be held accountable if they commit a crime. What we do want, is a system that will have the punishment be proportional to the crime. Too often we see people with punishments that far exceed the crime. People with disabilities who are arrested should have to answer for their crimes (if they actually committed the crime) but that process should not cause someone to forever lose their housing, cause severe medical complications, or destabilize the person completely.
We believe HB19-1225 and SB 19-191 will help make justice more just in Colorado for the community that we represent and request your support.