Head to my YouTube now (https://www.youtube.com/channel/UCClrdkiH_6RTZ1mRiIBVv6A) to hear more about how people with legitimate chronic pain from disease and/or disability are adversely affected and stigmatized by those fighting to address the Opioid Crisis. This is super important. Studies have shown that over 85% of people who use pain medication to manage long-term chronic pain from disease or disability never become addicted or misuse their medication. This crisis must be addressed, but it must be addressed in a way that doesn’t criminalize people in the disability community who rely on pain management for a decent quality of life. I hated seeing my counseling clients, friends, and family members affected by this. Going through the proper channels is vital, but it is delaying appropriate care for far too many people. This has to change. Let me know what you think!
Head to my YouTube to hear my thoughts as a disability expert & advocate on the killing of Pamela Turner, a woman who lived with schizophrenia. While she was walking her dog, her life tragically came to an end at the hands of violent police officers. I’ve provided trainings to prosecutor’s offices on how police and attorneys need to learn to assess every situation differently to accurately account for disability, and how easy it is to de-escalate a crisis involving a person with a disability. Check it out and let me know what you think!https://www.youtube.com/channel/UCClrdkiH_6RTZ1mRiIBVv6A
In February I was the victim of severe, blatant disability discrimination and violations of the Americans with Disabilities Act. The person who wronged me was nominated by the past governor of Michigan and appointed by the Supreme Court. In an effort to file a complaint against this high-level government employee, I have discovered that the jurisdiction of who can receive my complaint is limited but includes the Governor. I voted for Gretchen Whitmer, @gewhitmer on Instagram, after hearing her speak at the first Women’s March in Lansing, MI before she was elected. She spoke about the importance of diversity, community involvement, and listening to others.
Now I hope to work with Governor Whitmer, my governor, to prevent this type of discrimination from ever happening again in our state and country. I’ll keep reaching out to her office until we have the opportunity to discuss these issues and my evidence-based ideas for resolving them, which are grounded in my work as a disability expert. It’s 2019, and yet even as a disability expert and counselor I was shocked to experience the discrimination I faced solely because I am a person living with a physical disability. We cannot accept discrimination because to do so would be telling people with disabilities they are not worthy of respect, dignity, or opportunity.
•[image description for those using screen readers: a picture of the banner of a website showing Ashley Jacobson’s request to voice a concern to Governor Gretchen Whitmer’s office has been submitted. Governor Gretchen Whitmer’s picture is at the top of the photo, and she is a white woman with brown, shoulder-length hair who is wearing a navy shirt under a red blazer. She also is wearing a very classy pearl necklace. Next to her picture to her right is the text, “Governor Gretchen Whitmer,” and to the right of that is a small outline of the state of MI and “Michigan.gov” with a light picture of a bridge behind that.]
I uploaded a new video (with captions!) on YouTube today about the real purpose of accommodations and correct a common myth! Check it out! Ashley Jacobson’s YouTube channel
I have created an accessible YouTube channel that features disability topics and strategies for living your most fulfilled life with disability! It has captions and the videos are quick and easy to follow, covering news topics, disability issues, and methods for living your best life. Let me know what you think!
As always, thanks for sharing and caring!
Ashley Jacobson, JD, MA, CRC
Disability Expert & Advocate
Self-determination is a tricky process for people with disabilities because it operates on a continuum. Life is unpredictable, and for the most part–so is disability. But, with self-determination, the person with a disability can regain some level of control and dictate the choices and direction of her life. Self-determination is a concept where a person has the confidence and ability to decide and move forward with the best, next-steps in his own life. Not what you or I think is best, but what they want for their own lives. For many, especially those with disabilities, well-meaning loved ones have in a lifetime of protecting the person with a disability (PWD), have actually kind of sheltered or unintentionally taken control over the life of the PWD.
It’s difficult for loved ones, and I understand that better than most. I have been guilty of being a helicopter constantly propelling what I thought was best over the person I love with a disability. It’s incredibly challenging to shut that off because you love that person and want what is best for them. I know it may seem like I’m asking a lot for you to back down (or if you are a PWD, to take control)…but please, hear me out.
When I was a special educator, and then a rehabilitation counselor (CRC), I saw many students and young adults with disabilities that had their differences in ability. They had skills that needed more developing, skills they were not capable of displaying, and skills that made them unique assets in the best way. However, those unique-asset skills were often under-utilized because they had not practiced them independently on their own incentive or triggering. For example, they could do really well in an interview after having practiced and trained, but they were going on job interviews below their skill level because someone (though again, well-meaning) told them this job would be “so good for you!” Or, they were not going to job interviews at all because their loved ones were really (and understandably) nervous about them putting themselves out there and taking a massive step towards independence.
The biggest limitation in the life of any person is their own belief that they are limited. Yes, of course individuals (with disability or temporarily able-bodied) have to be realistic. I’m not saying someone who has never dribbled a basketball, or someone who has played in a community basketball league–has the skill to try out for the NBA. But I am asking for you to not make assumptions about their abilities or limitations, because when you assume their limitations, they see themselves as inherently limited. Really sit down with the person, and ask him what he would like to learn. Ask him what skills are important for adults to possess. Objectively think of the many skills he has already learned, and try to compare those to the skills he wants to learn.
I am not suggesting that anyone just shut down and remove themselves out of the PWD’s life in one clean break, no longer helping the PWD with anything. It is a process, and of course you will never just be out of their lives–you love them! Nonetheless, self-determination is learned and blossoms in an environment that encourages growth, independence, and inclusion. This is one of the reasons why so many adults with disabilities phase out of the public education system, and wind up under-employed or unemployed. Further, when students learn skills at school relating to independence, they lose those skills if they are not generalized and practiced in the home-environment. And trust me, I completely understand that as a loved one of a PWD you are busy and have many, many responsibilities for yourself and your family. That’s why I want to give you some tools and strategies for encouraging the independence of the PWD so that maybe it can at the same time lessen your work load and empower your loved one.
It is difficult for many people without disabilities to break down the appropriate steps in fostering and empowering independence in a PWD. Every person is different, but here is an example of how one could foster the self-determination process in an adult with a disability (Also: You can reach out to someone who works in this field–like me!–if you want guidance on appropriate steps for a specific person…again, progress is a continuum with steps forward and steps back, and that is okay. This does not have to happen overnight!).
Self-determination skills: Determining food choices
- Watch a cooking show on tv that discusses nutrition and healthy eating
- Practice cooking simple meals in the kitchen with the PWD, emphasizing safety and nutrition (boiling water for pasta, making pasta, cleaning up after making pasta, with canned sauce)
- The PWD cooks on his own while the loved one is not overseeing, but is in the general area in case the PWD has a question
- Show the PWD where to find coupons, and discuss how much food really costs
- Watch tv shows about the health effects of not eating nutritious (but don’t be too scary about it, especially if the PWD is someone who can get easily overwhelmed or experiences severe anxiety–in this case you can discuss food choices in terms that are not so daunting with regards to the health consequences)
- Have the PWD go to the grocery store with you and have him hold the list (if possible, have him read and check off the list as you go–if he is not able to read, that’s okay too! You can sit with him and go through grocery store inserts, pamphlets, magazines, coupon clippings, etc. Just cut those pictures out and make the list out of pictures. You can even draw the pictures!)
- After practicing #6 a few times, and if he is safely independent in public (as in, won’t go with strangers, won’t give his money to strangers, isn’t a harm to himself or others), bring him to the grocery store and have him gather the food on the list while you wait at the front of the store with a book/magazine
- After practicing #7 a few times, practice money skills. Discuss pricing of food and different ways you can make payment. Go through #7 and at the end of each time you shop, have the PWD give the money for payment to the cashier. If the PWD gets nervous, that’s normal. You can go at times when the grocery store is less busy, or teach him how to use the self-checkout line, but ultimately practice will help him feel more comfortable.
- After practicing #8, and if he is safely independent in public, bring the PWD to the grocery store and wait in the car as he shops for the food on the list, and pays on his own.
- Have the PWD make the grocery list on his own, check it over to make sure it covers essential items that are financially-responsible choices.
- If not yet learned, teach the PWD transportation options like the bus. Public transportation systems have disability-accessible bussing but the more inclusive the better (again, depending on the actual, realistic abilities of the PWD). A PWD should live and operate in the least restrictive environment as appropriate. It may take time, and it will be a little daunting for both you and the PWD, but that is a normal part of growing up and in time and with practice, he could gain much independence and allow more free time and balancing of responsibilities for you and your household.
- Have the PWD look up transportation options on his own, and then schedule it on his own, go food shopping, pay, and return home on his own.
- Combine steps 1-12.
Again, this is just a generic example. Some of these steps can be combined or adjusted if the PWD is more advanced, or they can be broken down even more. I’ve broken down the process of making a PB&J into nearly 60 steps before for a client with a disability. The most important thing is that we don’t just give up and do something for a person with a disability simply because it’s the easier and quicker thing to do. Sure, there may be days when you do not have time to pre-teach, teach, and re-teach. When you do have time though, the best way you can love a PWD is by loving their independent drive and spirit. After all, you cannot and will not always be around and in times of need the PWD should feel competent to do as much as he is capable.
This post does not come from a place of judgment. I’ve been there, personally and professionally. I know what it is like to see a loved one go through something difficult and have to maneuver life-changes after the fact. This is just guidance on a tricky part about loving a PWD, and as always I am here if you have any questions! Feel free to email me at firstname.lastname@example.org
Thank you for reading and sharing,
Ashley Jacobson, JD, MA, CRC
Disability Expert and Advocate
Senator Warren, first and foremost— THANK YOU! I cannot even begin to tell you how much this tweet means to me. I am a disability advocate and expert, who is now 30 but at age 21 was diagnosed with Endometriosis and other co-occurring chronic illnesses. However, I started exhibiting symptoms years earlier.
Here’s the landscape of endo care in America. Endometriosis is more painful than child birth, and yet EVERY SINGLE WOMAN diagnosed has been told multiple times it’s all in their heads. It takes years to find an actually qualified surgeon, and the treatment options are archaic. Female diseases are stigmatized at such a higher rate than diseases that primarily affect men because women who report symptoms are seen as people who are exaggerating, irrational, and emotional instead of reasonable individuals showing clear evidence of disease. Delays in diagnosis caused serious damage to my internal organs and body systems. It’s not painful periods. It’s pain allll month long. It’s nausea every day of my life. It’s the detrimental cells that form and in time create damage and scar tissue that binds my internal body parts together and simple physical movements cause them to tear apart and create more damage. It’s the children I may not be able to conceive because endo is the leading cause of infertility. It’s wasting many days, nights, and money in traveling to specialists for surgery and checkups and paying thousands of dollars for treatment of symptoms because researchers don’t care to find a cure.
You may have lately seen commercials saying #SpeakENDO or that encourage speaking up about endo. They show women at the doctor and they are hesitant to share just how awful their symptoms are. The doctor is asking, “how has your pain been?” and the woman is down-playing it. This commercial INFURIATES me. Women ARE telling their doctors of their symptoms, over and over and over again. Doctors are the ones who aren’t listening. Doctors are the ones down-playing it, saying it’s all in our heads. Doctors aren’t asking us those questions. And as we get sicker and sicker they act like we’re getting crazier and crazier. Doctors are spewing myths about how a hysterectomy or getting pregnant will cure endo when there is no cure. Doctors are saying that because an ultrasound or a CT scan doesn’t show anything, endo isn’t present—when endo can ONLY be diagnosed through a surgical laparoscopy.
The truth is that women ARE speaking up. I’d love to see a campaign or commercial that shows just how women are really treated when they speak up. They are more than ignored—they are treated like drug-seeking scum. This is what endo is.
I’m eternally grateful that someone in politics is showing care and compassion, and I pray this commitment to finding real options and de-stigmatizing endo continues past this tweet. As a future attorney (I finish law school in less than a month 💛) I would love to see women with chronic illness receive the proper care and legal attention required when this disease becomes debilitating, tough preferably before that. I’d love to see reform in the medical field as to how this disease and other diseases are taught. I’d love to see policy changes and licensing consequences that are correlated to the mistreatment of female patients. I commit myself to making a positive change and being an unwavering advocate. Senator Warren, I hope you do too. Thank you for your tweet. Thank you for bringing awareness. The endo community is grateful.
Thanks to @drsalliept for bringing this tweet to my attention and as always, thanks to @endowhat for being a persistent agent of change in the endo world 💛