“Disability” at Work

July 8, 2012

I am learning a great deal about disability. Though I can classify myself as disabled, I have never thought of myself this way. The term in itself implies limitation and little hope. Synonyms for disability include: disqualification, incompetence, incapability, lack of power or ability. There is even a definition that is specific to work. Random House Dictionary includes a definition of “a physical or mental handicap, esp. one that prevents a person from living a full, normal life or from holding a gainful job”.

In general, I prefer to reflect on the statutory definition of disability. Statutory Definition — With respect to an individual, the term “disability” means

(A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;

(B) a record of such an impairment; or

(C) being regarded as having such an impairment.

I like the focus on the impact on activities verses implying that someone with a “disability” can’t live a normal life. I would prefer the word “impairment” be changed to condition, because many “impairments” also come with strengths that may be less measurable. Unfortunately we also fail to note that some of these “impairments” can have less impact on someone’s life activities with simple modifications.

The best way I can describe myself is that I have been regenerated. I believe that my condition has moved me to” re-create, reconstitute, and, make over, esp. in a better form or condition.” The pain I feel in my body brings me a greater awareness of my physical and mental state. Because stress increases my pain level, I am more committed to addressing problems and maintaining a positive attitude. Because I struggle with fatigue, I have made adaptations to my schedule. I have more down time to spend with my family, and constantly evaluate my values and priorities so I can focus on what is most important. As a person I am much more compassionate, humble and understanding of the challenges people with limitations face. I also have learned new survival skills, medical terminology, and assessment techniques.

When I make adaptations to my life, I notice less the negative impact of my physical condition. Because I have extreme pain back and have periodic pain spasms, sitting can be difficult. At home, I encounter the intense pain less, as I sit on my couch to type. During meetings or in the office, I am still searching to find a comfortable working chair and ways to keep this more manageable. When dealing with my fatigue, I find that it is best to tackle the detailed activities during my prime time, as I need to be able to focus. When I feel more tired, it helps to focus more on my natural abilities like talking to people or doing routine tasks.

Because my symptoms are less visible, many people are not aware of my physical challenges. Disclosure is a balance not easily understood. For me it has less to do with rights, and more to do with support and my motivations for disclosure. It is important that I have people around whom I can talk to in both the work and personal environments. In situations where I am doing a task, or have less personal contact it is less significant to fulfilling my role. I choose to live with a degree of potential misunderstanding instead of making my condition part of the equation. I seek to remember that those around me may also have limitations that I am unaware of.

I am grateful that I have had opportunities to explore my vocational interests through volunteer and work experiences. It isn’t easy, and has required a great deal of flexibility and personal growth through some tough challenges. I keep in mind my own values, and keep pressing ahead. It may not always turn out the way I want or expect, yet, it is always enriching if I allow it to be.

References:

Random House Dictionary, © Random House, Inc. 2010.

http://www.eeoc.gov/policy/docs/902cm.html

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Discrimination in the Workplace

December 8, 2011

What happens when disclosure goes wrong?  When I started my disclosure series, I didn’t anticipate including an article regarding discrimination in the workplace.  With all the protection and awareness regarding equal rights, one wishes to be hopeful that discrimination is a rare event.  Unfortunately though, when there is disclosure or an apparent disability discrimination happens.  It can be difficult to determine whether this different treatment is something that qualifies as discrimination.

Laws are put into place to protect employers and employees.  It is always important to understand the local and federal laws and guidelines when you have a disability.  It is also helpful to understand your company policies and/or other contracts in the workplace.  If you need clarification on policies, it is important to ask your human resources representative (ideally in writing) and document whenever possible.   Many people may need greater understanding of the laws, and will want to consult a lawyer and/or the civil department to have a better grasp on its impact for them as a person with a disability or for the employer who hires them. 

Communication is always key to solving problems and another means of protection for everyone.  It can be difficult to know whether asking questions or stating complaints can be helpful or hurtful when dealing with working relationships.  In a larger company, a human resources employee can answer questions and it probably won’t affect the working relationship.  In a smaller company, the person dealing with human resources may be your boss or co-worker, and questions may create conflict for the person with a disability.  An employer might feel accused and deny or rationalize any wrong doing without even taking the time to listen to the complaint.  Often times, people do things that might look like discrimination, but it is more related to lack of information, discomfort, lack of interest, or something else entirely.   Most people do not want to cause others harm, and often a conversation can make people change.  Unfortunately for some, a conversation may just make things worse, and result in a power struggle or they will attempt to help, but don’t follow through or change their behaviors.  As an employer, it is very important that you take their complaints seriously and consult others for input.   Keeping records of such statements can be helpful for everyone if a formal complaint is made at a later date.    

Feeling like you are discriminated against can be difficult emotionally and physically.   It is always helpful to have outside support and people to process with that you can trust.  This may be a family member, a counselor, a lawyer, a support group, and/or a friend.   Often we can sense things that are going on, but may not be able to quite articulate if it is actual discrimination or whether we want to address it.   Many people, on some level, will have an emotional reaction to someone with a disability, and this is easy to sense when it is aimed in your direction.  Learning how to react to this can help build bridges.  However, when their biases result in different treatment that causes harm, more specific communication is generally needed.  If communication doesn’t work you may want to take other actions.  This could be filing a complaint, seeing a lawyer, look for a new job, observing and documenting, or some other option.  Having people around to help you see your options and validate your experience can help ensure you make the best choices that work for you.

Being accused of discrimination is difficult for an employer.  A lawsuit of discrimination would hurt a company’s reputation and cause financial harm.  The supervisor might lose their job and/or have to go through an extensive evaluation of their actions.  Taking the time to work through the issues, whenever possible, is always advised.  Most people want to be treated well, and legal action is generally done when nothing else works.  It is helpful to understand clearly what the person is looking for, and how specifically you can make it better.  This may require listening to a lot of venting, and probing gently for clarification on what can be done.  If needed, a mediator or human resources personnel might mediate to give a different perspective.  It can be useful to have someone they trust sit in as well, to aid in reaching an agreement and/or understanding.  Consulting with others to receive legal and general feedback can give guidance on questions to ask, and assist in processing through the employer’s own emotions.  It is ok to have conflicts with a person who has a disability, but important that the same protocol is followed as is done with other employees.    

Discrimination can diminish if we all choose to look more intently at the subject of discrimination.  When we take the time to see how we treat certain people differently, we are on the path to making changes.  All of us have biases that impact what we do.  Ignoring these biases, however, can cause great harm especially when we act upon them continuously.  The best way to change our own biases is to talk about them and confront them directly.  Often this involves spending time with the people we are most afraid of, and learning to treat each person as an individual.  Even in the most challenging cases, we always grow from these experiences as we choose to turn towards something better.  With greater awareness, we can proactively make our work environments more satisfactory, where we embrace our fellow man and see the unique strengths we each bring. 


A letter to an Employer regarding hiring someone with a disability

September 8, 2011

I have written a general letter to an employer considering hiring someone with a disability and/or with chronic pain.  This letter is expressing my ideal work environment and what it is I need and desire from an employer.  Every individual is different, so I can’t generalize to others, yet it can be a great starting point for understanding and thinking about accommodations and support in the work place.  My letter is  addressed  to a potential employer, as this is the beginning of the employment relationship and where the self advocating begins. 

 Dear potential employer,

 Please consider me for employment opportunities in your company.  I have many skills and experiences in which I can contribute to make your company a success.  I also have chronic pain, fatigue and some ADD traits.  Even though my health conditions require some adaptations, they have contributed to making me the strong person I have become.  I am clearer about my priorities and values, I think outside of the box, I know how to work with others, I am persistent, have integrity and can see the silver lining in the most difficult situations. 

Hiring someone with a disability will make you and your company better.  I have met many people with various disabilities when I worked as a vocational consultant, and every one of them has changed me in some way.  I have been inspired by the positive attitude, the ability to overcome obstacles, the self evaluation, the willingness to ask for help, and the humbleness of many.   I have learned to be clearer in my statements, to slow down, to change my perceptions about certain disabilities, to ask others if they want my help (not assume they do), and to listen so I can receive a clearer picture of their life.   I have also seen how difficult it can be for some people to find a sense of value and worth in the middle of such difficulty, and how many doors were shut down because they didn’t fit into our expectations of “normal”. 

The structure you set up that will be effective in drawing out my strengths, will also contribute to greater relationships with others.  Writing out instructions is helpful for me to be clear on what is needed, and develops procedures in the office.  Regular meeting times helps me feel supported and allows time for constructive feedback.   Working together we can see problems and visions from a different viewpoint making us more creative.   

The greatest thing an employer can do is to learn about the specific individuals needs in regards to their disability.  Asking questions to understand how I am doing and what I need creates a supportive environment.  Because of privacy issues, it can be helpful for the supervisor to ask whether I  would like to talk about the impact of my disability in the work place and if I wish to be the one to bring it up or to set up meetings periodically to discuss this.  Many employers believe they are being supportive by treating them like everyone else, or ignoring the issue.  However, for some individuals this can feel like the elephant in the room, and problems may not be addressed in their early stages.  Though the responsibility does fall on the employee, it can be difficult for someone with a disability to be assertive about their needs for fear of losing their job, discrimination and/or rejection. 

For some disabilities it may be helpful to have discussions about it with the staff.  If the employee is interested, they can provide information to other co-workers about their condition and how it impacts them.  If such disclosure is public it is imperative that the employee chooses this option, and follow up support is available.  This can be a good option for the more visible disabilities or where the accommodations are apparent to everyone.  In an ideal world disclosures about all disabilities would be treated with compassion.  This is generally not the case, especially with mental limitations, and could become problematic for the employee in his/her relationships with others. 

Making accommodations for an employee may feel burdensome.  It can be difficult to schedule time to make changes in the work place and to have discussions with your employee.  If the individual seems demanding or there are personality clashes, it can be challenging to sort through what is needed in the situation.  An employee may not even understand clearly what they need in the work place, because the type of work and environment can be different than anything they have experienced.  Often being around someone with a disability can trigger emotional reactions with co-workers and employers that are uncomfortable.  The powerlessness in the situation goes against our nature to fix things, we may feel like they are getting special privileges, and we may have had negative experiences in the past that effect our current assessment.  Processing through your own biases is crucial to a healthy environment. 

Learning how to find your own support is vital if you find yourself reacting to the employee and if you start making decisions that go against the values and strategic plan of your work place. 

Communication and support are the keys to any healthy work environment.  If we have regular times to discuss issues then the remainder of the time can be focused on production and fulfilling company goals.  There are many resources available to learn about the local laws, accommodations, and services for those with disabilities.  Some disabilities can receive job coaching, through state or local programs and employers can receive training and guidance on particular disabilities.  Being proactive will give a greater likelihood of success.  However, just because one experience wasn’t successful it doesn’t mean the next one won’t be.  With an open mind, you will be amazed at the lessons you will be taught, and the inspiration you gain from watching someone with significant barriers succeed in their job duties. 

 Thank you for considering me and others with disabilities for employment. 


Disclosing a disability at work – part 3

July 7, 2011

Disclosure at work can be a difficult decision even in the best of circumstances.  Will it hurt my chances of advancement?  Will it give me protection for the accommodations I need?  Will it help others to know about my pain and fatigue?  Though I wish that honesty really was the best policy, when it comes to disclosure privacy may be the best option. 

Many questions are helpful to ask when making the initial decision.  Will I be able to complete the essential functions of the job without some accommodations?  What am I looking for and is disclosure the process to get me there?  I consider the risk associated with sharing particular facts and feelings regarding my “disability”.  How would I handle insensitive comments, silence and/or ignorance in the workplace?  Am I able to receive the support that they offer me?  When would be the best time to share and what specifically do I need them to know in order to succeed at my job?  It can also be helpful to know a little about who you are disclosing to, as reactions are usually about their own experiences and circumstances, and less about your particular situation. The answers to these questions aren’t stagnant, they will vary depending upon my health, the duties assigned, my co-workers and other life circumstances. 

Trust and effective communication are essential in the disclosure process with supervisors.  If I am unable to articulate my pain and my needs, it is impossible for them to grasp its impact.  Unfortunately, this isn’t always possible.  When I first returned to work, I wasn’t really clear about my needs in a work environment, because it wasn’t an experience I had encountered yet in my illness.  This lack of clarity, made my situation more complicated and created increased frustration.  I am much more persistent when I trust someone and more willing to ask for feedback and verify the meaning of key statements.   Without trust, it is difficult for me to feel safe especially when dealing with people in authority.  Generally specific request are granted, where emotional support is less defined.  However, emotional and practical support from a supervisor can make all the difference in the disclosure process. 

The ADA provides protection for disclosures but can create fear with supervisors regarding potential law suits.  I have found understanding the ADA is helpful in knowing my rights, as well as learning the language of the law.  However, an argument with an employer about rights rarely results in a positive work environment.  If disclosure is necessary (or apparent) it can be helpful to be clear about the specific request and why this is necessary for you to perform the essential functions of the job.  The JAN Network is a helpful resource to learn more about the ADA and accommodations for specific disabilities.  Being respectful, kind, clear and persistent will be aide in reducing the fears of the employer.  Most requests are best done in person with a follow up e-mail, but this may not be necessary for simple request and/or if the relationship with the supervisor is strong.  If an employer refuses or makes excuses it is important to keep accurate documentations in case further action is needed and/or desired. 

The issues with disclosure are numerous and can’t be completely communicated in a simple blog.  The most important thing about disclosure is regardless of the reaction of others at work, you have value in the workplace.  Find supportive people within the work place and/or outside of the workplace to process with whether you choose to disclose or to maintain your privacy.  Don’t give up.  Look for the gold in your relationships, your periods of growth, moments of service, your strengths, and living out your values. 


Dislosure Part 2 – Friends and Family

July 6, 2011

Disclosing that I have chronic pain brings feelings of vulnerability and fear.  Will I be rejected or stigmatized?  Disclosure is complicated in many arenas.  Though it brings exposure, honesty and change, the individual effects can be both positive and negative.  Disclosure might be a comment that reveals that I have chronic pain, or a deep discussion where I share about my struggles and blessings of living with chronic pain.    

When disclosing with friends and family, I often don’t receive the desired result.  Some will express sympathy, yet it can be hard for all of us to enter a reality that is so remote from our own.  I do this when people share something I can’t completely grasp.  It isn’t always personal.  I may not connect the significance of what was shared nor the magnitude of the pain.  Other times, I may be feeling more self focused and self protective and fear entering their world for the unwelcomed feelings that appear.  I have to be careful of my own expectations of wanting people to understand something, especially when I can be guarded in my conversation.  The best validation for me usually begins with self affirmation, and then taking in the care of others even when it isn’t expressed in the way I would like. 

Disclosure with my loved ones wasn’t at all what I anticipated.  As a young child, I had day dreams about having an illness, injury and/or death that would bring greater love and attention into my life.  More often than not, my pain brought the opposite effect.  Close ones would ask questions, give advice, make judgments, and/or distance themselves from me.  Some of this was typical of the busyness of our society.  Other times, deep sharing, resulted in outward compassion through incredible support and service.  I had several friends make great sacrifices to help me during the more difficult times.  The most common response I received was “but you look good”, generally meant as a compliment, yet had little to do with my chronic pain. 

“Looking Good” had its own set of issues relating to disclosure.  Because I look healthy, it doesn’t always make sense the choices I made to reduce my pain.  I can laugh at the image of me in church sitting slouched in my chair (while others were standing) with sunglasses on to protect my eyes from the lights that were hurting my eyes.  I looked like a lazy, rebellious lady, instead of a person willing to do what was needed for the spirituality I desperately needed at this time.  I have had many other situations where I have needed to sit, move around or even lay down to reduce my pain and/or preserve my energy.  These situations helped me to grow past my worry about being watched and misperceived.  I can still feel self conscious, but do what I need to take care of myself. I learn to take risks to keep myself engaged and active which helped reduce my own pull towards depression and anxiety. 

Disclosure for me is more about the particular connection point, not necessarily related to the closeness of the relationship.  I have friends and family where we connect around our kids, spirituality, shared experiences, passions, beliefs, etc.  Discussion of my chronic pain doesn’t seem to fit into the picture.  It can be because this is outside of the scope of the relationship, and/or I want safe places to not focus on it.  It is the unique friendship that is able to go beyond the context and branch into new territory.  Sometimes this works, other times we go back to the familiar.  For some learning about my chronic pain in greater detail makes a shift in their understanding of my experience, for others they may consider it as a minor annoyance for me (like a sore ankle).  The greatest disclosures bring deeper sharing from the person I am talking with, where they share about their own struggles and our bond becomes greater.  For those closest to me in the universal sense, comprehension comes together like a puzzle, each sharing they seek to grasp, will gain a clear picture even if many pieces are missing.  This of course applies to all of us.  I too, must seek to learn about others, to hear their disclosures – of pain, of fears, of dreams…so I can see the true picture of who they are not what I want them to be. 


Disclosure Part 1 – When to speak

July 5, 2011

Today is one of those days I don’t want the stigma of having chronic pain.  I can’t go a week without reading in the paper or on the internet some of the stereotypes about people with chronic pain.  Some of these stereotypes includes:  it is all in their head, we have adequate treatment for chronic pain, they caused their pain, pain medication doesn’t help, etc. 
 

 It can be easier at times to create labels for people and situations we don’t understand.  If we can put a label on something that is not desirable, then we can remove ourselves from the unpleasant box.   Sometimes labels are necessary and helpful, giving us a pathway to treatment and understanding.  Other times, it creates an illusion of control, where we attempt to compartmentalize and ignore those who don’t fit perfectly into a box. 
 

Having the stigma of a mental problem can compound the sense of shame around chronic pain.  Mental illness is complex, and may or may not be related to chronic pain.  It can be hard to know cause and effect.  Did the mental issues come first or the chronic pain?  It is important to realize that as far as labels go, it doesn’t really matter. Both mental illness and chronic pain are medical issues where recovery is the desired result. However, not everyone who has chronic pain struggles with mental issues, just as not everyone with mental issues has chronic pain.  For those who have the burden of both, it can greatly intensify the shame. 
 

When disclosing about chronic pain, it is helpful for me to understand my own biases and beliefs about my chronic pain.  This gives me a greater ability to counteract negative comments from myself or others.  If I believe I am not competent, or overwhelm others with my illness, then it is easy to internalize the ignorant comment, or lack of response I receive when I disclose information about my pain.  I also will be able to receive compassion and care more easily, when I look for supportive comments.  Someone’s silence may actually be then processing the information, or be related to something else entirely.  Affirming my strengths is helpful for me to see myself in a holistic light.  I have strengths because of who I am, but also because of how my pain has transformed me.  As I choose to disclose, I will find that through this process, I will connect with some incredible people, where our unique experiences will unite us because of my disclosure about my pain.  


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