Abilities, Disabilities, and the War on Drugs

April 2018

Contributions

The SSDP Mosaic

is edited by Elise Szabo and Kat Murti. This issue features contributions by Alex Akin, Leslie Templeton, Luis Montoya, and Jake Agliata.

Take Action Do an SSDP Dare and add your points on the SSDP Chapter Activity Tracker. Share The SSDP Mosaic on Facebook or Twitter using #SSDPMosaic (10 points)

on Facebook or Twitter using #SSDPMosaic (10 points) Evaluate the organizing space(s) your chapter uses to ensure your events are as accessible as possible. Consider using this checklist. You might also invite a disabled person or someone from your school’s student accessibility services to evaluate the accessibility of your space. (10 points)

Host a meeting on the topic of how drug criminalization affects disabled people. Use The SSDP Mosaic and the “Additional Resources” section below to help frame the conversation. (10 points)

and the “Additional Resources” section below to help frame the conversation. Is there a disability rights club on your campus? Or an accessibility services center? Support one of their actions, invite them to speak at a meeting, or co-host an event with them. (10 points)

Introduction

Content warning: ableism, medication shaming, mentions of suicide

Disabled people represent one of the largest, yet most underrepresented marginalized groups.

Around 10% of the world’s population, or 650 million people, live with a disability

.

Because many abled people have so little experience with real disabled people, sometimes abled people misunderstand their needs and the core issues they face. This can result in abled people unintentionally perpetuating misunderstandings and misinformation when they attempt to advocate for the disabled community.

People with disabilities experience a whole side of the War on Drugs that abled people do not see, and that information is crucially important to crafting good drug policies.

This issue of

The SSDP Mosaic

will introduce you to the issues disabled people face in activist spaces and discuss some of the ways in which the War on Drugs deeply impacts disabled people’s day-to-day lives.

Are Drug Policy and Reform Communities Failing the Disability Community?

Nearly

1 in 5 Americans

— 20-25% of the U.S. population — have a disability, and people with disabilities take part in drug use at

two to four times

the rate of the general population. Disabled people who use drugs associated with dependence are also more likely to have difficulty in stopping if they choose to do so, especially those with disabilities such as intellectual/developmental disabilities. The 7–8 million people in the U.S. with an intellectual disability suffer disproportionately from substance use problems, largely because of a

lack of empirical evidence to inform prevention and treatment efforts for them.

Yet, many abled people — usually because of a lack of education on the matter — do not think of people with disabilities when thinking of the communities of people who use drugs, and, as a result, they are not always included in the drug policy reform conversation.

Do you regularly find harm reduction flyers and materials in braille? Do you know how to help someone with autism and sensory processing issues who is having a bad psychedelic experience? Do your peer support efforts for drug use at festivals ensuring have ASL interpreters at the ready? Are the needle/syringe exchange programs in your area located in wheelchair accessible places that meet ADA guidelines?

The lack of effort to include disabled people is a form of ableism

, which means discrimination (whether intentional or accidental) against disabled people. Like other often unconscious biases,

ableism is intertwined in our culture

, and can result in, sometimes unconscious, negative attitudes around disability. Understandably, it can be very difficult for disabled people to feel integrated into an activist community when they feel they always have to be ready to defend themselves and their needs, so an environment that condones ableist comments and attitudes can severely disincentivize involvement.

Lack of accessibility

alienates disabled people and creates further barriers to their participation

. The drug policy reform movement needs to do better in proactively including disabled people — including, amongst others, the deaf and hard of hearing community, low vision and blind communities, wheelchair users, and chronically ill people. Event and conference locations may have physical barriers that prevent wheelchair users, and others with limited mobility, from participating. These include a lack of working accessible elevators, accessible restrooms, ramps, flat entrances, accessible seating sections, and walkways that are wide enough for a wheelchair. Without services like ASL interpreters, wheelchair accessibility, and braille informational pamphlets/handouts, many disabled people find themselves in a catch-22 situation where they are unable to advocate for what they need in order to be better drug policy reform advocates.

One key cause of this oversight is cost. Funds can be scarce in non-profit organizing and organizers often don’t want to spend their limited budget on pricey accessibility services when they don’t know if people with those particular disabilities will be in attendance. They instead rely on people with disabilities giving enough advance notice that they can be accommodated. While this sounds like a good solution, disabled people often have to plan extensively for almost every daily activity abled people take for granted. Deciding to attend an event last minute is a luxury people with disabilities do not get in an inaccessible world, making it harder for them to access services like needle exchanges or life-saving drugs. As a bare

minimum, organizers should make every effort to ensure spaces are wheelchair accessible and can easily be adapted for additional accommodations. Rockstar activists will also

create a plan for providing all accessibility measures for big events; promotion of the event should publicize that these services will be made available upon request and include reliable contact information.

Leslie’s Experience

The reason I got involved with drug policy is because I saw many of my disabled friends I grew up with — people I knew from special education, testing accommodations, or disability support groups — die from overdose. We want naloxone, we want supervised injection clinics, we want decriminalization and legalization — just like the rest of you.

Alex’s Experience

As a wheelchair user with organ failure, the biggest accessibility issue I have had has been with an officer in my SSDP chapter. He would criticize the amount of pain medication I had to be on and often tried to tell me I needed to stop my life saving treatments because he thought his natural supplements would magically cure me. Last semester, the AIrBnB my chapter stayed in for the regional conference was inaccessible to me. So, this officer decided — without looking into it at all — that I couldn’t go to the national conference because I’m disabled, and that, if I went, I’d have to go completely separate from my chapter. When our chapter’s leader found out about what had been done, she apologized and tried to make arrangements so I could attend, but with the extensive amount of planning that has to go into traveling with my condition, we couldn’t make it happen.

Opioids and Disability

Many disabilities are chronic illnesses which require treatment regimens that include prescription medication, which can be vital for daily functioning, symptom management, and maintaining quality of life. When a substance becomes scheduled, it adds barriers for disabled and sick people who need that treatment option. Restrictions placed on those drugs cause serious complications for disabled people and generally cause this poverty-prone demographic to have to pay significantly more money for specialists and medications.

Recently, we have seen pushes both on the federal and state levels to limit the prescribing and dispensing of opioids. This kind of legislation is being supported across the political spectrum by well-meaning people seeking to prevent unhealthy substance use, without looking at the actual impact these policies have. The DEA, which sets national manufacturing quotas for opioids,

ordered a 25% reduction in 2017 & 20% again this year

.

As a result, trauma patients, post-surgical patients, and hospitalized cancer patients frequently go undertreated for excruciating pain.

The CDC for the most part

ignored the input of expert pain management specialists as they developed their guidelines on opioid prescription for chronic pain, and even violated the CDC’s own research protocols

, in what appears to have been an effort to bias the outcomes of their work against the use of prescription pain relievers.

This politically-driven policy shift has lead to

tens of thousands of chronic pain patients having proven and essential pain medications arbitrarily reduced or outright withdrawn by doctors afraid of DEA prosecution

. Meanwhile, doctors are leaving pain management by the droves, often “dumping”

hundreds of pain patients without referral to another doctor

.

According to a recent survey

on the impact of the CDC’s opioid prescribing guidelines,

71.13% of of pain patients have had their dose reduced, and about one third have been totally cut off

. Without medication people lose varying amounts of ability. For some, they slowly are able to do less each day, while others may be unable to work or care for themselves. This loss of independence can be devastating —

84% reported a lower quality of life and 42% reported considering suicide

because of the severity of their pain. Understandably, pain patients who have been cut off from treatment often try to find new doctors from the ever shrinking pool of available professionals. When they are unable to find help,

some suffer in silence, others turn to self medicating (11%), and some turn to hospice or suicide

to escape what seems like unending agony. This is particularly tragic considering a simple prescription could improve their quality of life dramatically.

Alex’s Experience

Once my organ failure became life threatening, I was agony constantly. Before even trying heavier opioids, a doctor told me to end my life because according to her, they only prescribe opioids for people with cancer now. She said I was destined to be miserable as I was in so much pain I often struggled to sit up on my own.

After moving to a bigger city to get better care, I found a palliative care and hospice doctor who was willing to prescribe to me, only to have her to resign out of fear of DEA prosecution.

Now, I’m with another palliative care and hospice practitioner who has saved my life by putting me on a high enough dose of fentanyl that I can now take care of myself rather than continuing to be bedbound.

The scary thing is that I almost died before I got this care; I spent over a year suffering, requiring around-the-clock care and unable to leave my home. All that time, I could have been able to fight my organ failure so much better if I had access to the medicine I do now. It’s even more terrifying that, due to DEA pressure, I could again end up without the medications that I know save my quality of life, forcing me to go back into hospice care.

“Pill Shaming” is Real and Harmful

Stigma around medications like amphetamines, benzodiazepines, opioids, medical cannabis, ect., leads people to be afraid to seek treatment and pressures doctors to limit prescriptions. Unfortunately, many people still hold

negative views of those who rely on regular medication

— even in cases where prescription medication is the most effective available treatment. Many in the disability community report being pressured by family and friends — and even strangers — to switch to “more natural” alternative treatments, even in cases where there is no evidence of that alternative treatment working for their conditions. This can result in patients using medications extremely sparingly (

undermedicating can lead to worsening of medical conditions

) or even ceasing treatment altogether. The most harmful stigma, though, is that held by medical professionals — which is now being worsened by the

threat of prosecution faced by medical providers accused of “overprescribing” or running “pill mills.”

Nurses will block referrals, pharmacists will refuse to fill some prescriptions, and doctors will turn patients with hard-to control-symptoms away.

Leslie’s Experience

I often cringe when I hear someone mention “big pharma.” Not that I don’t agree big pharma is an issue and has its faults, but many times these rants become ableist, attacking people who take the medications “big pharma” has produced. One of the biggest examples of this is when people talk about “overmedication.”

I have been taking medication for my ADHD since I was 7 years old. This is usually where people respond poorly. If you go back and look at all my Facebook posts about medication, you will always see someone declare I’m overmedicated, inadvertently shaming me and anyone who dares to buy into “big pharma’s plot to medicate the entire human population!” Sometimes, the commenters even go on about how ADHD was made up by the pharmaceutical industry, and that I don’t need the medication that helps me function in a society that wasn’t built for people like me (just in case you are wondering, ADHD is indeed a real thing).

Without my meds, I would fail classes because I wouldn’t be able to focus or get my work done due to the 400 thoughts constantly running through my mind all at once. Without medication, I say things that get me in trouble because I am moving quicker than my brain can follow; I’m acting before I think. I can’t even drive a car safely without my medication because I can’t concentrate on what I’m doing and end up daydreaming. I lack executive skills and my medication helps me compensate for my differently wired brain. Being medicated was the greatest thing that has ever happened to me, because it allowed me to succeed in a society that isn’t built for those with ADHD and other disabilities.

Many times medication-shaming rants stem from bad experiences with medications. Those experience are completely valid. But, it becomes problematic when people use their bad experiences with a medication to declare that a medication is not good for anyone to use. This can translate into a person claiming that medication is something “big pharma” is trying to harm you with, and shaming other people for being medicated.

The issue is that medication doesn’t affect everyone in the same way because we are all wired differently. Prozac was one of the worst experiences for me. It made me sick, extremely loopy, and just not me. I hated it and was relieved to get off it. When my best friend went to the psychiatrist a year later, the doctor prescribed Prozac to her. She came to me asking what my thoughts were, and I said, “Try it.” Even though Prozac was one of the most miserable experiences I have ever had with a medication, I know that she isn’t me and that this medication has helped millions of people. Turns out, it was the single greatest thing she has ever taken. She went from being suicidal to being able to manage her depression and anxiety. Her grades started getting better and she went from a 2.9 average to graduating with a 3.6 — all because she was able to find a medication that worked for her.

We can all do better to include disabled people in our fight against oppression, in the drug policy reform movement and beyond it. Check out the “Take Action” section at the top of this Mosaic and the “Additional Resources” section below to learn more about making your activism accessible.

Additional Resources

Interested in learning more about these issues? These links are great resources to get you started…

“Real inclusive organizing should at a minimum include: Incorporating disability into your values or action statements; having disabled people on the organizing committee or board; making accessibility a priority from day one; and listening to feedback from disabled people.”

“Our revolution must include a space that is accessible to everyone.”

“People are no less ‘valuable’ or important if they are not physically present in activist movements. It just means that society is inaccessible and sometimes it’s impossible for someone to be physically present. We can all work to undo this.”

“In order to successfully throw sand in the gears, we need as many people out there throwing it as possible — and that means a movement that includes all kinds of bodies and minds.”

“If protests are inaccessible, which they often are, a significant portion of the community is ignored. One that not only requires representation, but are desperate to represent themselves and are frequently incapable of doing so due to the construction of modern protest movements.”

Use this hashtag to join an ongoing Twitter conversation about accessibility in activism.

Drug War News From Around The World

The War on Drugs is an international travesty. This section of

The SSDP Mosaic

, co-sponsored by SSDP’s

International Outreach Committee

, highlights some of the top drug policy reform news from around the world…

“Social workers operating in Sydney’s inner city public housing estates have slammed a new policy that denies homes to those with a history of serious drug offences, saying it sets a ‘troubling precedent’ that further marginalises people trying to leave their past behind them.”

“Brazil’s Supreme Court issued a landmark ruling that pregnant women, mothers of children up to the age of 12 and of persons with disabilities, accused of non-violent crimes, should await trial under house arrest not in detention.”

“Coca cultivation surged in anticipation of the peace deal, from 96,000 hectares to 146,000 in 2016. Farmers planted more because they expected cash from the government to switch to something else. Voluntary substitution is progressing painfully slowly. That is partly because the government has not complemented it with a programme to build roads rapidly and provide services in coca-growing areas.”

“The narcotics-law reform that resulted in Sandra going to rehab, getting job training, and serving three years of probation instead of years behind bars is known as 77-bis. The law is narrow — it only applies to women arrested for smuggling drugs into jails — but it’s revolutionary in a region that prioritizes hard-line punishments for drug crimes.”

“Experts from the Finnish government’s leading health agency have called for the decriminalisation of all drug use, igniting a debate that has drawn in top politicians and police authorities…Ending criminal sanctions for drug use would reduce the marginalisation of young people, and encourage people who use drugs to engage with health and social services.”

“On March 1, lawmakers voted in favour of the bill, which will allow licensed businesses to cultivate and process cannabis for medical purposes. Land for cultivation must be at least 4,000 square metres in size and secured by fencing. The legislation also stipulates that the processing of the cannabis must take place within the same grounds that it is grown.”

“Lugard Abila has worked in harm reduction for years and lost a drug using friend to a ‘mob justice’ attack in Kenya. ‘Mob justice’ is just one example of the effects of the stigma prohibition creates around drug use and users.”

“Two years ago in Skopje, Macedonia, a pregnant 16-year-old girl sought treatment for problematic opioid drug use but kept hitting a brick wall. Every program she contacted for help gave her the same answers: they didn’t know how to administer the treatment she needed, they were not competent to treat minors, and so on.”

“While Malaysia has taken steps to make the death penalty for certain drug offenses non-mandatory, slow implementation of the law and the retention of the death penalty means that many more will executed in the name of the war on drugs.”

“Police in Mexico’s corruption-plagued state of Veracruz set up units that used death squad-style tactics to abduct, kill, and dispose of at least 15 people who they suspected of being drug cartel informers and drug runners, according to charges filed by state prosecutors.”

“Myanmar has moved a step closer to completing the first reform in decades of its legal framework relating to drugs. Indeed, the recent publication of two single pieces of legislation is likely to form the basis of the country’s approach to drug control for at least several years to come.”

“In a letter to the Dutch Parliament published on 9 March, two senior ministers — justice minister, Ferdinand Grapperhaus, and medical care minister, Bruno Bruins — outlined plans to allow the legal cultivation of cannabis for recreational purposes in several municipalities for four years.”

“Professor Obot, who spoke at the Youthrise Nigeria Drug Policy Training for media practitioners in Abuja, stated that despite criminalising drug use for many years, this had not achieved its goal of eliminating drug production and use.”

“Drug policy in the Scandinavian country is no longer a criminal matter but one of public health – a move that has been widely praised by experts.”

“The Social Democratic Party (PSD), the largest party in the Portuguese Parliament, has endorsed the legal regulation of cannabis…The PSD holds more parliamentary seats than any other party, but remains in opposition due to the ruling Socialist Party’s alliance with several smaller left-wing parties.”

“Russia is in the throes of an HIV/AIDS epidemic with 100,000 new cases recorded every year — one of the highest rates of new infections in the world — and fewer than half of those diagnosed even receive treatment. The incurable virus is in retreat in much of the world, but cases in Russia account for 80 percent of new cases in Europe and Central Asia. The Russian Federal Aids Center told VICE News that the outbreak is now carrying the virus from intravenous drug users and other high risk groups to the general population.”

“The goal for establishing the centers is for information dissemination on drug policy reform, harm reduction and prevention programmes in targeted communities with the aim of reducing harms associated with drug use especially among young people.”

Get Involved

Each month, SSDP’s

Diversity, Awareness, Reflection and Education (DARE) committee

publishes

The SSDP Mosaic

, a newsletter dedicated to exploring intersectionality and the War on Drugs. Previous issues have covered topics as diverse as

domestic violence

,

trans awareness

,

Black Lives Matter

, and

women’s unique experiences

in the War on Drugs.

The DARE Committee strives to promote inclusivity within the SSDP network, and facilitate collaboration and engagement with presently underrepresented perspectives, individuals, and movements. In order to ensure that

The SSDP Mosaic

more intentionally and meaningfully reflects these values, the DARE committee is pleased to invite members of our student and alumni network to

submit ideas for upcoming issues

. Don’t forget to join our

Facebook group

and our

Google group

to keep up with regular DARE-related news and discussions.

If you have any questions, please contact Elise at

elise@ssdp.org

. We look forward to reading

your submissions

!

Many disabled people continue to fight for equal rights and access to vital medications, despite facing barriers like immense physical pain, very limited energy, constant illness, and other obstacles. However, the disabled community struggles to be seen and heard due to accessibility issues that persist in many activist and political spaces.