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How Do Muslims Plan for Disability

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Families with children with disability have an extraordinary set of challenges and blessings.  Disability (or special needs) is a broad term.

Many disabilities will prevent what we often think of as “normal.”  It may hinder or prevent educational opportunities, and employment. Many people with “special needs” can get educated, get married and live long and productive lives.  The problem for many parents of younger children with special needs is that they typically have no certainty about their children’s future needs. Even if the situation looks dire, it may not stay that way.  

How do parents plan for a world where they may not be around to see how things will end up for their special needs children?  What can they do to help their children in a way that does not violate Islamic Inheritance rules?

Certain types of disability, especially the loss of executive decision-making ability, could also happen well into adulthood.  This can be a threat to a family’s wealth and be the cause of internal conflicts. This is the kind of thing every adult needs to think about before it happens.  

The Problem

The issues are not just that parents believe their special needs child will need more inheritance than other children. Muslim parents usually don’t think that. Some parents don’t want their special needs child to get any inheritance at all.  Not because of any ill-will against their special needs child; just the opposite, but because they are afraid inheritance will result in sabotaging their child’s needs-based government benefits.    

Many, perhaps most special needs children do not have any use for needs-based benefits (benefits for the poor).  But many do, or many parents might figure that it is a distinct possibility. This article is a brief explanation of some of the options available for parents of special needs children.  It won’t go over every option, but rather those that are usually incorporated as part of any Islamic Estate Planning.

Please Stand By

Example:  Salma has three daughters and two sons.  One of her children, Khalida, 3, has Down Syndrome.  At this point, Salma knows that raising Khalida is going to be an immense challenge for herself, her husband Rashid and all the older siblings.  What she does not know, however, is what specific care Khalida is going to need through her life or how her disability will continue to be relevant. She does not know a lot about Khalida’s future marriage prospects, ability to be employed and be independent, though obviously like any parent she has nothing but positive hopes for her child’s life.   

In the event of her death, Salma wants to make sure her daughter gets her Islamic right to inheritance.  However, if Khalida needs public benefits, Salma does not want her daughter disqualified because she has her own money.

Her solution is something called a “stand-by special needs trust.” This type of trust is done in conjunction with an Islamic Inheritance Plan and is typically part of a living trust, though it could also be a trust drafted into the last will.  I will describe more about what a special needs trust is below. For Salma, she is the Trustee of her trust. After she dies, she names her husband (or someone else) the successor Trustee. The trust is drafted to prevent it from becoming an “available resource” used to determine eligibility for public benefits such as Supplemental Security Income (SSI), Medicaid and other benefits that go with that.

If it turns out that Salma passes away when Khalida is 5, and her assets are held in trust for her until she is 18 and her Trustee determines she does not need a special needs trust, she will get her inheritance precisely like everyone else based on their Islamic right.  If she does need benefits, the Trustee will only make distributions to Khalida that would not harm her eligibility.

This way, there is no need to deny Khalida her inheritance because of her disability, and she is also making sure giving her daughter inheritance would not harm her daughter’s healthcare or other necessary support.  

Munir Vohra is a special needs advocate and an athlete

The Shape of Special Needs Trusts

A stand-alone Special needs trusts, which is sometimes called a “supplemental needs trust” the kind without the “stand-by” variation I described above, are a standard device for families that have children with special needs. A trust is a property ownership device. A Grantor gives the property to a Trustee, who manages the property for the benefit of a beneficiary. In a revocable living trust, the Grantor, Trustee, and Beneficiary are typically the same person.  

When the trust is irrevocable, the Grantor, Trustee, and Beneficiary may all be different people. In a special needs trust, the person with a disability is the beneficiary. Sometimes, the person with a disability is also the Grantor, the person who created the trust.  This might happen if there is a settlement from a lawsuit for example and the person with special needs wants it to be paid to the trust.  

In many if not most cases, the goal may not be to protect the beneficiary’s ability to get public benefits at all. Many people with a disability don’t get special government benefits.  But they do want to protect the beneficiaries from having to manage the assets. Some people are just more susceptible to abuse.

The structure of the arrangement typically reflects the complexity of the family, the desire of siblings and extended family to continue to be involved in the care and attending to the needs of the person with a disability, even if they are not the person directly writing checks.   

Example: Care for Zayna

Example: Zayna is a 24-year-old woman with limited ability to communicate, take care of her needs and requires 24-hour care.  Zayna has three healthy siblings, many aunts, uncles, and cousins. Her father, Elias, earns about $70,000 per year and is divorced. Zayna’s mother Sameena cannot contribute, as she is on social security disability. However, Zayna’s adult brother and sisters, brother in laws, sister in law and several aunts, uncles want to help Zayna meet her needs E.lyas creates a third party special needs trust that would ensure Zayna has what she needs in the years to come.

Zayna receives need-based public benefits that are vital to her in living with her various disabilities and her struggle to gain increasing independence, knowledge and dignity.  So the trust needs to be set up and professionally administered to make sure that when Zayna gets any benefit from her trust, it does not end up disqualifying her ability to get any needs-based benefit.  

Contributions to the special needs trust will not go against Islamic Inheritance rules unless made after the death of the donor.

If Zayna dies, her assets from the special needs trust will be distributed based on the Islamic rules of inheritance as it applies to her.

When disability planning is not about Public Benefits

Perhaps most families with special needs children do not use any needs-based public assistance.  They are still concerned about special needs and planning for it.

Example:  Khadija, 16, is on the autism spectrum. For those familiar with the autism spectrum, that could mean a lot of things.  For her parents, Sarah and Yacoob, other than certain habits that are harmless and easy to get used to, it means Khadija is very trusting of people. Otherwise, she does well in school, and her parents don’t think she needs way more help than her siblings and she has just as good a chance of leading a healthy and productive life as any 16-year-old girl.  

The downside of being too trusting is that the outside world can exploit her.  If she ends up getting inheritance or gifts, she may lose it. The parents decide that when she gets her inheritance, it will be in a trust that would continue through her life.  There will be a trustee who will make sure she has what she needs from her trust, but that nobody can exploit her.

In some ways, what Khadija’s parents Sarah and Yacoob are doing is not so different from what parents might do if they have a child with a substance abuse problem.  They want to give their child her rights, but they don’t want to allow for exploitation and abuse.

Considering your own needs

There are many people who are easy marks for scammers, yet you would be unlikely to know this unless you are either a close friend or family member, or a scammer yourself.  While this often happens to the elderly, it can happen at just about any age. Everyone should consider developing an “incapacity plan” to preserve their wealth even if they lose their executive decision-making ability.   

There is this process in state courts known as “conservatorship.” Indeed, entire courtrooms dedicate themselves to conservatorships and other mental health-related issues.  It is a legal process that causes an individual to lose their financial or personal freedom because a court has essentially declared them not competent to handle their affairs. Conservatorships are a public process.  They can cause a lot of pain embarrassment and internal family strife.

One of the benefits of a well-drafted living trust is to protect privacy and dignity during difficult times.

Example: Haris Investing in Cambodian Rice Farms

Haris, 63, was eating lunch at a diner.  In the waiting area, he became fast friends with Mellissa; a thirty-something woman who was interested in talking about Haris’s grandchildren.  The conversation then turned Melissa and her desire to start a business selling long distance calling cards. Haris was fascinated by this and thought it made good business sense. Haris gave Mellissa $20,000.00. The two exchanged numbers. The next day, Mellissa’s number was disconnected.

Haris’s wife, Julie became alarmed by this.  It was out of character for her husband to just fork over $20,000 to anyone on the spur of the moment.  What was worse is that the business failed immediately.  

Three months later,  Haris meets Mellissa at the diner again.  She then convinces Haris to invest $50,000 in a Cambodian rice farm, which he does right away.   His wife Julie was pretty upset.

How living trusts helps

As it happened though, Haris, a few years before, created a living trust.  It has a provision that includes incapacity planning. There are two essential parts to this:  The first is a system to decide if someone has lost their executive decision-making ability. The second is to have a successor Trustee to look over the estate when the individual has lost this capacity.  This question is about Haris’s fundamental freedom: his ability to spend his own money.

If you asked Haris, he would say nothing is wrong with him.  He looks and sounds excellent. Tells the best dad jokes. He goes to the gym five times a week and can probably beat you at arm wrestling. Haris made some financial mistakes. Everyone makes mistakes.

Julie, and his adult children Haroon, Kulsum, Abdullah, and Rasheeda are not so sure it’s just a mistake.  The living trust created a “disability panel.” This panel gets to vote, privately, in if Haris should continue to act as Trustee of his own money.  If they vote that he should not manage his own money, his wife does it for him.

The family has a way to decide an important and sensitive issue while maintaining Haris’ dignity, privacy and wealth.   Haris’s friends don’t know anything about long distance calling cards or a Cambodian rice farm; they don’t know he lost his ability to act as Trustee of his trust.  Indeed the rest of the world is oblivious to all of this.

Planning for everyone

Islamic inheritance is fard and every Muslim should endeavor to incorporate it into their lives.  As it happens it is an obligation Muslims, at least those in the United States, routinely ignore or deal with inadequately.  However, there is more to planning than just what shares go to whom after death. Every family needs to create a system. There may or may not be problems with children or even with yourself (other than death, which will happen), but you should do whatever you can to protect your family’s wealth and dignity while also fulfilling your obligations to both yourself and your family.

Ahmed Shaikh is a Southern California Attorney. He writes about inheritance, nonprofits and other legal issues affecting Muslims in the United States. His Islamic Inheritance website is www.islamicinheritance.com

2 Comments

2 Comments

  1. Avatar

    Osman Umarji

    May 17, 2019 at 1:36 PM

    JazakumAllahu khair for this wonderful article. As a parent to a child with special needs, this article was incredibly helpful and informative in planning for his future.

  2. Avatar

    Huma

    May 27, 2019 at 2:04 PM

    جزاك الله خيراً

    I do not have any special needs members and I still found this article so informative! May Allah set grant strength to those who do make these decisions and create empathy in our hearts for them.

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OpEd: Why We Must Reconsider Moonsighting

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Ed. Note: We understand that this is a matter of debate in many communities, MM welcomes op-eds of differing points of view. Please use this form.

When the Crescent Committee was founded in 2013, the Muslim community of Toronto was hopeful that this new initiative might resolve the long-standing problem of mosques declaring Eid on different days. This moonsighting organization was to follow global moonsighting as a methodology – if the crescent were to be sighted anywhere in the world, they would declare Eid. Global moonsighting was seen as a potential way of solving the yearly moonsighting debate which local sighting had been unable to solve thus far. It was hoped that this approach would also ensure congruence with Fiqh Council of North America’s (FCNA) lunar calendar which determines the Eid day in advance based on astronomical calculations.

This year, however, all those hopes were put to the test. Early afternoon on June 3rd, the 29th of Ramadan, the Crescent Committee (CC) started receiving reports that the moon was sighted in Saudi Arabia. Given that it was not possible for it to be seen there based on visibility charts, the committee required corroboration from another country in order to declare Eid. As the day progressed, they got reports from Iraq, Nigeria, Brazil, Mali and even from Maryland in the US. All those reports could not be relied upon because either the committee was unable to get in touch with their contacts in those countries or because the reports did not satisfy the criterion they laid out.

As they were sifting through the reports, the CC was shocked to learn that one of its founding members, the Islamic Foundation of Toronto (IFT), had already declared Eid! IFT is one of Toronto’s oldest and biggest mosques and their leadership decided to declare Eid based on the announcement from Mauritania. Mosques following FCNA’s calendar were already celebrating Eid the next day, so IFT thought it best to join with them with hopes of preserving unity.

With one of its own members having declared Eid and mounting pressure from the community given it was past 10 pm, the CC decided to wait to receive the final (hopefully positive) reports from California. This meant having to wait till sunset on the West Coast which would mean midnight on the East Coast. Unfortunately, even from California, there were no confirmed reports. Finally, at midnight, the Committee declared that they would complete 30 days of Ramadan and celebrate Eid on the 5th of June.

Alas, after spending a frustrating day waiting for an announcement till midnight, Toronto Muslims were told that this was going to be another year with two Eids in the city. This year, however, the split was not between proponents of astronomical calculations and moonsighting, but been proponents of the exact same moonsighting methodology!

Solving a 50-year old problem

This year’s debacle in Toronto represents nothing new. There have been numerous failed attempts to unite the moonsighting community. In 1995, the Islamic Circle of North America (ICNA), Islamic Society of North America (ISNA) and the Ministry of Warith Deen Muhammad joined hands to form the ‘Islamic Shura Council of North America’ with hopes of having a unified Eid declaration. Just like the Crescent Committee, this too was eventually disbanded due to dissenting voices. Other examples to unite and better organize moonsighting include the 2007 National Moonsighting Conference in California and the 2009 National Hilal Sighting Conference in New York. These attempts simply haven’t worked because there are far too many independent mosques and far too many moonsighting methodologies – uniting everyone in the absence of a governing authority is nearly impossible.

The story also highlights the three main problems that proponents of moonsighting have struggled to solve for nearly half a century in North America and other parts of the Western world. These can be summarized as follows:

1) Mosques declaring Eid on different days based on differing moonsighting methodologies. This has created notorious divisions within the community and has led to the awkward situation of families, often living in the same city, not being able to celebrate together. It can also lead to endless argumentation within families as to which mosque to follow with regards to this issue.

2) The unpredictability of the Eid date means that Muslims continue to have difficulty taking time off from work and planning family vacations. This problem is particularly challenging for the hourly-waged working-class individuals who work in organizations with little flexibility. The process of having to explain to an employer the complications surrounding Eid declarations can be a source of unnecessary hardship for many. It is not uncommon for many to take off a day which ends up being the ‘wrong day’.

3) Delayed announcements, especially during the summer months, due to process of receiving and verifying reports after sunset. Not knowing whether or not the next day will be a holiday, often until the late evening, has been a continued source of distress for families every year.

It was the desire the solve these very problems that brought together a group of visionary Muslim jurists and astronomers in Herndon, Virginia in 1987. Organized by the International Institute of Islamic Thought (IIIT), the Lunar Calendar Conference was one of the first attempts to find an innovative solution to the problems posed by traditional moonsighting. A detailed history of the events leading up to the conference and its aftermath have been documented before. In short, Muslim scholars and mathematicians continued work on the astronomical lunar calendar for nearly two decades after the conference and it was finally adopted by FCNA and ISNA in 2006.

A valid methodology from the Shariah

While opposition to FCNA’s lunar calendar was quite strong when it was first introduced, there has been growing acceptance of astronomical calculations over the past 15 years as a result of continued research and education on this subject.

The use of calculations to determine the dates of Ramadan is something which numerous reputable scholars have allowed throughout Islam’s history [1]. While this has always been the view of a small minority, championed mainly by scholars in the Shafa’i legal school, it is still based on a sound interpretation of religious texts. The difference of opinion on this issue arises from hadith of the Prophet where he stated,  “If [the crescent moon] is obscured from you, then estimate it” (فإن غم عليكم فاقدروا له ). A detailed exposition in support of calculations from a classical perspective was recently presented by Shaykh Salahuddin Barkat.

Shaykh Musa Furber, one of America’s leading Shafa’i jurists, also comments on the towering figures from our tradition who supported calculations: “Since the time of Imām al-Nawawī, there has been an evident trend within the Shāfiʿī school of law for acceptance for the personal use of calculations for fasting. While a small number of earlier Shāfiʿī scholars did accept it, it seems to have been confined to a small minority within the school. It was not until the time of Imam al-Nawawī (may Allah grant him His mercy) that the opinion amongst scholars of the school started to shift towards accepting calculations as valid and even binding — even if limited to the calculator and whoever believed him. Although al-Subkī (may Allah grant him His mercy) is usually accredited with causing this shift, some scholars credit Imam al-Nawawī’s himself with starting this trend. The opinion was accepted by both Shaykh al-Islām Zakariyā al-Anṣārī and Imām al-Ramlī, though not by Imam Ibn Ḥajar (may Allah grant all of them from His mercy). These imams form the basis for reliable opinions in the late Shāfiʿī madhhab.”

Understandably, this opinion was considered weak and ignored through much of Islamic history. Some limited its scope and allowed it only when the moon was obstructed or for use by experts in astronomy. There really is no need for calculations in Muslim lands where there exists a centralized authority to sight the crescent and there are public holidays for the entire populace. However, in secular countries with Muslim minorities, this position must be revisited as it offers a very practical solution to the crises we find ourselves in.

Only one way forward

According to a 2011 survey of over 600 mosques in the US, the adoption rate of FCNA’s calendar stood at 40%. At the writing of this article nearly 8 years later, this number has likely increased to over 50%. The survey indicated that about 40% of the mosques followed local sighting while the remainder followed global sighting. Given the recent shift towards global moonsighting, it is likely that the moonsighting community is evenly split between the two positions at this time.

These statistics represent the only logical way forward to solve this decades-old problem: the most efficient way of achieving unity is by converging behind FCNA’s lunar calendar. This methodology is the only real solution to the crises we currently find ourselves in. Not only does it address all our needs, but this approach has also shown to provide immense ease and facilitation for Muslim communities that have followed it in the past 15 years.

The moonsighting leadership has failed to unite despite a half-century of effort; it is inconceivable at this point that this would ever happen. Even if it did miraculously happen, 50% of the community would still be following FCNA’s calendar and all three of our main problems will remain unaddressed. Additionally, with the current trend of uniting behind the approach of global sighting, ‘moonsighting’ has largely become an administrative exercise. It involves the hilal committee simply waiting for reports from abroad and trying to ascertain their veracity. Only a handful of communities go out looking for the moon and establish the sunnah of moon sighting in a bonafide sense.

In large communities where differing Eid dates is a reoccurring problem, advocating for the adoption of the lunar calendar must come from the grass-roots level. Muslims most affected by this problem should lobby their local mosques to change their positions and unite behind FCNA’s lunar calendar.

While it may seem impossible to get the leadership of mosques to abandon an old position, it has already been done. In 2015, nine major mosques in the Chicago area set aside their differences and put their support behind the lunar calendar. This is an incredible feat and has created ease in the lives of thousands of people. If similar initiatives are taken in other cities split along lines of lunar dogmatism, it is conceivable that the moonsighting issue could be resolved in North America within the next five to ten years.

The Prophet told us to calculate the moon if it is obscured by clouds. Today, the moon is not obscured by physical clouds but it is clouded by poor judgment, distrust, egotism, disunity, and pride. We must resort to calculations to determine the birth of the new moon, not because it is the strongest legal position or a superior approach, but because our status as minorities in a secular land necessitates it.

References:

[1]  From SeekersGuidance: Scholars upholding this can be traced all the way back to the first Islamic century. The textual basis for this opinion is the hadith narrated by al-Bukhari, “When you see it [the new moon of Ramadan] then fast; and when you see it [the new moon of Shawwal], then break the fast. If it is hidden from you (ghumma ‘alaykum) [i.e. if the sky is overcast] then estimate it (fa-qdiru lahu);” (al-Bukhari, hadith no. 1900). The last verb, fa-qdiru, can be validly understood to mean calculation. Of the scholars who held this, are Abu al-‘Abbas b. Surayj (d. 306/918), one of the leading founders of the classical Shafi‘i school, the Shafi‘i scholar and renowned mystic Abu al-Qasim al-Qushayri (d. 465/1072), the leading Shafi‘i judge Taqi al-Din al-Subki (d. 756/1355), the Shafi‘i legal theorist al-Zarkashi (d. 794/1392), the renowned Maliki legal theorist al-Qarafi (d. 684/1285), and some Hanafi scholars. The late Shafi‘i commentator al-Qalyubi (d. 1069/1659) held that all sighting-claims must be rejected if calculations show that a sighting was impossible, stating, “This is manifestly obvious. In such a case, a person may not fast. Opposing this is obstinacy and stubbornness.” See al-Mawsu‘ah al-fiqhiyyah al-kuwaytiyyah, c.v. “Ru’yat al-hilal,” vol. 22, pp. 31-4. The leading scholar of the late Shāfi‘ī school Muhammad al-Ramli (d. 1004/1596) held that the expert astronomer was obliged to follow his own calculation as was the non-astronomer who believed him; this position has been used by some contemporary Shafi’i scholars to state that in the modern world, with its precise calculations, the strongest opinion of the Shafi’i school should be that everyone must follow calculations; see ‘Umar b. al-Habib al-Husayni, Fath al-‘ali fi jam‘ al-khilaf bayna Ibn Hajar wa-Ibn al-Ramli, ed. Shifa’ Hitu (Jeddah: Dar al-Minhaj, 2010), pp. 819-22. See also the fatwa of the Hanafi scholar Dr Salah Abu al-Hajj (http://www.anwarcenter.com/fatwa/معنى-حديث-لا-تصوموا-حتى-تروا-الهلال-ول) last accessed 9/5/2016) which states, after arguing against relying on calculations, “However, the position of [following] calculations is the position of a considerable group of jurists, so it is a respected disagreement in Islamic law, whereby, if a state were to adopt it, it is not rejected, because the judgment of a judge removes disagreement, and the adoption of a state is [as] the judgment of a judge.

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Eid Lameness Syndrome: Diagnosis, Treatment, Cure

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How many of you have gone to work on Eid because you felt there was no point in taking off? No Eid fun. Have you ever found Eid boring, no different from any other day?

If so, you may suffer from ELS (Eid Lameness Syndrome). Growing up, I did too.

My family would wake up, go to salah, go out to breakfast, come home, take a 4+ hour nap and then go out to dinner. I didn’t have friends to celebrate with and even if I did, I wouldn’t see them because we stuck to our own immediate family just as they did.

On the occasion that we went to a park or convention center, we would sort of have fun. Being with other people was certainly better than breakfast-nap-dinner in isolation, but calling that a memorable, satisfying, or genuinely fun Eid would be a stretch.

I don’t blame my parents for the ELS though. They came from a country where Eid celebration was the norm; everyone was celebrating with everyone and you didn’t have to exert any effort. When they moved to the US, where Muslims were a minority, it was uncharted territory. They did the best they could with the limited resources they had.

When I grew up, I did about the same too. When I hear friends or acquaintances tell me that they’re working, doing laundry or whatever other mundane things on Eid, I understand.  Eid has been lame for so long that some people have given up trying to see it any other way. Why take personal time off to sit at home and do nothing?

I stuck to whatever my parents did for Eid because “Eid was a time for family.” In doing so, I was honoring their cultural ideas of honoring family, but not Eid. It wasn’t until I moved away that I decided to rebel and spend Eid with convert friends (versus family) who didn’t have Muslim families to celebrate with on Eid, rather than drive for hours to get home for another lame salah-breakfast-nap-dinner.

That was a game-changing Eid for me. It was the first non-lame Eid I ever had, not because we did anything extraordinary or amazing, but because we made the day special by doing things that we wouldn’t normally do on a weekday together. It was then that I made a determination to never have a lame Eid ever again InshaAllah.

I’m not the only one fighting ELS. Mosques and organizations are creating events for people to attend and enjoy together, and families are opting to spend Eid with other families. There is still much more than can be done, as converts, students, single people, couples without children and couples with very small children, are hard-hit by the isolation and sadness that ELS brings. Here are a few suggestions for helping treat ELS in your community:

Host an open house

Opening up your home to a large group of people is a monumental task that takes a lot of planning and strength. But it comes with a lot of baraka and reward. Imagine the smiling faces of people who would have had nowhere to go on Eid, but suddenly find themselves in your home being hosted. If you have a big home, hosting an open house is an opportunity to express your gratitude to Allah for blessing you with it.

Expand your circle

Eid is about commUNITY. Many people spend Eid alone when potential hosts stick to their own race/class/social status. Invite and welcome others to spend Eid with you in whatever capacity you can.

Delegate

You can enlist the help of close friends and family to help so it’s not all on you. Delegate food, setup, and clean-up across your family and social network so that no one person will be burdened by the effort InshaAllah.

Squeeze in

Don’t worry if you don’t have a big house, you’ll find out how much barakah your home has by how many people are able to fit in it. I’ve been to iftars in teeny tiny apartments where there’s little space but lots of love. If you manage to squeeze in even two or three extra guests, you’ve saved two or three people from ELS for that year.

Outsource Eid Fun

If you have the financial means or know enough friends who can pool together, rent a house. Some housing share sites have homes that can be rented specifically for events, giving you the space to consolidate many, smaller efforts into one larger, more streamlined party.

Flock together

It can be a challenge to find Eid buddies to spend the day with. Try looking for people in similar circumstances as you. I’m a single woman and have hosted a ladies game night for the last few Eids where both married and single women attend.  If you are a couple with young kids, find a few families with children of similar age groups. If you’re a student, start collecting classmates. Don’t wait for other people to invite you, make a list in advance and get working to fend off ELS together.

Give gifts

The Prophet ﷺ said: تَهَادُوا تَحَابُّوا‏ “Give gifts to increase love for each other”. One of my siblings started a tradition of getting a gift for each person in the family. If that’s too much, pick one friend or family member and give them a gift. If you can’t afford gifts, give something that doesn’t require much money like a card or just your time. You never know how much a card with kind, caring words can brighten a person’s Eid.

Get out of your comfort zone

If you have ELS, chances are there is someone else out there who has it too. The only way to find out if someone is sad and alone on Eid is by admitting that we are first, and asking if they are too.

Try, try, try again…

Maybe you’ve taken off work only to find that going would have been less of a waste of time. Maybe you tried giving gifts and it didn’t go well. Maybe you threw an open house and are still cleaning up/dealing with the aftermath until now. It’s understandable to want to quit and say never again, to relent and accept that you have ELS and always will but please, keep trying. The Ummah needs to believe that Eid can and should be fun and special for everyone.

While it is hard to be vulnerable and we may be afraid of rejection or judgment, the risk is worth it. As a survivor and recoverer of ELS, I know how hard it can be and also how rewarding it is to be free of it. May Allah bless us all with the best Eids and to make the most of the blessed days before and after, Ameen.

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Bipolar Exiled: Oscillating between the Mind’s Terrain and Physical Boundaries

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By Farzande Jehan

 

“And what is the matter with you sister, you are not well either?”

She is speaking to me in Urdu. We are both Pathan. And now I am thinking of one universal ailment that I can supply this lady with and leave it at that. I say that I have depression. She looks at me puzzled, looks at the lady sitting next to her, searching her face for a clue but to no avail. Can I explain ‘depression’ to her? This is going to be difficult. Why don’t I..

“I have a mood disorder.”

Pakistanis use the word ‘mood’ and ‘moody’ all the time; she should know. As I wait for a response, the same blank expression on her face. No comprendo. Rescue her furzy, she is losing you.

“Okay, so sometimes I am very happy, bohth khush,” I raise my hand as high as possible, “And sometimes I am very sad, bohth khafa.” I bring my hand down low.

Ahhh!”

The thing’s been expressed in the right words.

To elaborate I say: “What I come here for…” -and there is newfound confidence in my voice too- “…is to make sure that it is leveled.”

This I demonstrate by slicing through the room with my theatrical hand. I resettle in my chair. I have successfully regained my right to be here. I am quiet not because I am rude, but because I need composure.


2009

I was 23, visibly Muslim, living in NYC, and just about ready to enter an adulthood promised to many of the youth of my time. I was a graduate student the year I was diagnosed with bipolar disorder, and had all but completed two of the courses that led to my degree. I owed many of life’s successes and some failures too -but more of the good- to my ex-commuter status. My family preferred that I live at home, so I’d take the D from Brooklyn and transfer to the 1 somewhere in Midtown (God help you on the weekends when maintenance reroutes).

The summer of my onset, two white passengers in an underground train whispered about the news of Michael Jackson’s death. The couple scheduled to get help from martinis to cope with their pain.

The isolation I experienced and the spiritual inclination I harbored from a young age worked as seamless elements in the pursuit of removing me from my reality… your reality. I lived in a place that was in extreme contrast to the ideals I cherished. New York did successfully provide the tools that accurately identified the whatnots so that the whats that mattered remained.

Insanity is doing the same thing over and over again and expecting different results. How do you reconcile a reverence for a Deity that felt too far? My jugular vein reminded me of vessels and of things that hold quantity. Water indeed is life and Muslims agree that God is everywhere, so where do we draw the line? If I labored just enough, the distance that separated me from my Creator would shorten, I believed. The city that never sleeps left me sleepless.


A dirty curtain separated the men from the women. We were in the fourth season of the year and I start counting mine from Spring. My family returned to the go-back-to-your-country type of country in 2014, before Trump came to office and after Obama dropped drones on my ancestors’ homeland. A heater was supplied for the menfolk. The woman who was interviewing me earlier tended to her sick child, laid stretched out on the seat because her daughter had difficulty sitting up. Mental distress carries the marker of a plague struck in nations like the one where I live. Poverty exposes what little cover there is.

The office we were in was Dr. Rehman’s. His portrait was grinning at us. It seemed to be saying, “Give me your money you lunatic, you need help!”

An ayat from the Holy Quran about shifa, remedy, that it is ultimately in the hands of Allah subḥānahu wa ta'āla (glorified and exalted be He), hung on the opposite wall, punching the arrogant grin in the face. In life we seek balance. The verse reassured me: “Don’t worry so.” It seemed to say: “Answer the man’s questions and go home happy – all is well.”

I breathed in as I looked down at my feet. I know that in Spirituality, things have specific destinies too and not just mortals. The thought that visits me from time to time: maybe it’s the shoes I am wearing that are carrying me to places where I don’t belong, belong.

A woman placed a prayer mat in front of me that day for herself. She was facing the qibla for the fourth time. I patiently waited for my number to be called. “Twelve!” I heard. Covering my face -because now I will be passing through rows of men- I got up to leave the patients’ patience testing room.


1997

I was twelve-years old in the year we immigrated to America, eleven when I first landed on the brave soil. We were arriving in two hours and mother wanted everything in order. The first thing she saw was the sight of her younger daughter’s head. My head! It needed attention. It required attention. I almost wanted to cry when she was brushing my hair, and not because she was pulling at the strands. I had tears in my eyes because I had tasted Tropicana orange juice with no pulp for the first time in my short life.

My best friend from high school had paid me a visit on my second hospital stay, I had been in treatment for four months and in denial of my initial diagnosis. The proceeding to dump all medicine and carrying on with life until trouble lurked once more -the serpent raising its head drama played itself out. It’s a common prelude that way too many people experience in the initial processing of a newfound knowledge about the self.

Brooklyn was hit by a storm so severe that my family walked several of the miles on the day I was getting discharged. There were no taxis in sight for hours and the MTA was not functioning. My friend was expecting her first baby and had rushed to see me. She had a bag full of oranges to give to me. The setting and the process of checking in to visit your loved ones -and not to mention the presence of other patients who are sometimes in worse condition than you are- has the potential to throw your visitors off. I did not want to shock her but I was too helpless in offering an alternative view.

People go to zoos to see animals in cages. Seeing me in a gown, though I had my head covered, a scarf -in that was the familiar-, had I seemed weak to her? Was I the sight people conjure when they think ‘mentally ill’? This was my friend, and I wonder how much of the stereotype I filled in for her and to what degree, if at all? Had she had pity on me or was being sympathetic her character trait? Shouldn’t unborn children be kept away from sick persons like me at that time?

Shattering The Stigma of Mental Illness

For those of us in societies where there is  chaos within and a violence outside, was I mentally ill if my brain is part of my body? I was bodily ill, wasn’t I? Organ-ly ill. My mind had not stopped working. I was not pagal*, No! (*refers to somebody who is insane and is mainly a pejorative in South Asian communities) My brain had gone into overdrive and my thoughts were shooting at each other. This I know because I lost control. How did I allow myself to become so wild that I needed to be tamed? What was this force? Was it even my fault and does every event have a cause? I must have looked like a prisoner yet I have tasted freedom. Out of my own free will, I carried a transaction to deposit the ‘me’ in me in the hands of the One who made me. Whereas qismt (destiny) is sometimes cruel, God we know is always Merciful.

It requires strength to hold an image of a person you care for, far removed from a space that you once shared and to meet them at that threshold. An image like that is etched in memories for long times. Sadaf knew of my liking of oranges. Her gesture meant more than any flowers ever could represent her love for me. My employer was her ex-employer, otherwise knowledge of my hospitalization(s) was usually limited to family. After getting discharged and being somewhat stable at this point, I visited her at her house. Ibraheem assumed that the beauty mark on my chin was nothing but a button! That if he pressed on it, I would turn into a walking/talking toy. I let him play for as long as he wanted since I loved seeing the smiles on his face and the way he would giggle. I’d behave like a robot and only stop the awkwardness when he’d press the button again.


The disorder that I have and the control that it has over me is somewhat like little Ibraheem’s curiosity. It presses a button and I turn into a person other than me. I please it. I entertain it to the extent where it starts to get bored or needs a diaper change not when I lose the strength to continue. The only downside in playing this game is that the thing habitually forgets to turn the button off. It leaves me running into walls and breaking things and getting hurt in return. We need a team of rescuers, a hospitalization, and strange medicine with stranger names to bring me back.

I was shocked when I first read in our Islamic literature that the Creator laughs.

Abu Razeen reported: The Messenger of Allah, peace and blessings be upon him, said, “Allah subḥānahu wa ta'āla (glorified and exalted be He) laughs at the despair of his servant, for he will soon relieve him.” I said, “O Messenger of Allah, does the Lord laugh?” The Prophet ṣallallāhu 'alayhi wa sallam (peace and blessings of Allāh be upon him) said, “Yes.” I said, “We will never be deprived of goodness by a Lord who laughs!” [Sunan Ibn Mājah 181]

I understand a thing like that somewhat differently from how others read it.

After spending my twenties toiling in making sense of it all, my recovery has a lot to do with a change of terrain. It is the distance I needed to sort things out. I studied Orientalism in New York but read Edward Said speak of his love for an aunt who helped Palestinian refugees find shelter in his Out of Place: A Memoir here in Pakistan. The human component of scholarship, something that was missing previously, became vital at closing the gaps of humanity I was made deprived of. Healing begun.

By sharing my story, I’d like for people who are diagnosed with illnesses like bipolar to keep steadfast. No matter your creed or the place where you are from, know that you are not alone. And for family and friends who bear witness to the turmoil that infects a loved one to stand strong. Your strength or lack thereof has a direct impact on our wellness.

In the Quran it says that we will be tested with sons and wealth [Surah Al-Anfal;28]. Having a mental illness is a kind of test that has no beginning, nor a definite end. Take care of your health before sickness visits you is a famous saying of Prophet Muhammad ṣallallāhu 'alayhi wa sallam (peace and blessings of Allāh be upon him). There will be days when you feel frustrated and question the just ruling of a Just God. Reach out and feel blessed, for being a Muslim carries the weight of family keeping bonds.

Ideally, the Ummah is one that conducts checks and balances so that the affairs of our Muslim brethren are running smooth. Unlocking and internalizing the goodness and the kheir that Allah subḥānahu wa ta'āla (glorified and exalted be He) has placed in the world for our taking requires humility, an admittance of our own neediness followed by the realization of and acknowledging our smallness in a universe that is run not by us. Believing in God and trusting in Him are not the same.

The meaning of the word Islam is peace. Muslims exchanging the greeting of peace with other Muslims is an experience. Transferring that practice and truly living that peace needs patience. The challenge of living with and sometimes outliving a mental illness requires a tailored kind of submission. The hush of stability hums low in the beginning when loud is the announcement of a calamity. Faith after all is belief in the existence of hope alongside the tragedy that is life. What is more, our bodies are rented to us. The obligation of living inside them is not a punishment. It is a privilege. The challenge is to be at peace with our predicaments and that can be easily achieved since I believe that all of us are capable of nourishing our minds and feeding our souls, perhaps not at the same pace but the possibility of recovery is guaranteed once we take that initial step. It is realizing the potential of and exercising resilience itself that saved me. To transfer that hope in the mode of words is the least I can offer. May Allah subḥānahu wa ta'āla (glorified and exalted be He) accept, ameen.

Show, Don’t (Just) Tell – The Right Way to Tackling Mental Health

 

The writer is currently a doctoral student in American Studies at Area Study Centre 
of Quaid-e-Azam University, Islamabad. Previously, she holds a Masters in Liberal Studies from Columbia University. You may reach the editorial team of Muslim Matters if you wish to contact her.

 

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